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202x Filetype XLSX File size 0.17 MB Source: www.safetyandquality.gov.au
Sheet 1: Cover - Appendix 2
| Patient-reported outcome measures: | ||
| Literature review | ||
| Prepared for the: | ||
| Australian Commission on Safety and Quality in Health Care | ||
| November 2016' | ||
| Appendix 2 | Excel database of grey literature | |
| Appendix 2a | Australia and New Zealand | |
| Appendix 2b | United Kingdom and Ireland | |
| Appendix 2c | United States and Canada | |
| Appendix 2d | Europe and Scandinavia | |
| Group/author | Web | Type of 'grey' literature | Title | Date | Summary | Type of PROM | Data Collection type (if applicable) | Country |
| Australia | ||||||||
| Agency for Clinical Innovation NSW (Chen) | www.aci.health.nsw.gov.au/__data/assets/pdf_file/0009/281979/ACI_Proms_Prems_Report.pdf | Paper | Integrated Care: Patient reported outcome measures and patient reported experience measures - a rapid scoping review | Accessed 2016 | Overview of PROMs and PREMs with a particular focus on the NSW Integrated Care Strategy written by Jack Chen, Simpson Centre for Health Services Research, UNSW. | Generic, disease and condition specific | NA - Overview | Australia, NSW |
| Arthroplasty Clinical Outcomes Registry NSW (ACORN) | http://www.acornregistry.org/images/ACORN_AnnualReport_2014.pdf | Report | ACORN 2014 Annual Report | 2014 | ACORN was established in 2012 and as of 2014 had 6 participating hospitals in NSW. It aims to improve the quality and effectiveness of arthroplasty surgery by monitoring, evaluating and reporting clinical outcomes (including generic, disease specific PROMs and satisfaction) and it routinely undertakes a 6 month follow-up of patients following surgery. | Disease specific - Oxford Hip Score; generic EQ-5D, NHS satisfaction and success items | State participating hospitals | Australia, NSW |
| Asthma Australia | http://www.asthmaaustralia.org.au/nsw/about-us | Webpages | Asthma Australia -about us | Accessed 2016 | Asthma Australia and Asthma Foundations provide a range of advocacy and education services and funding to support basic science and population health research. An example of research is a current trial evaluating the safety and tolerability of the drug dupilumab. This trial includes an evaluation of the effect of dupilumab in improving patient-reported outcomes including health-related quality of life. The PROM is not specified and the trial is in recruitment phase. | PROs used in a current affiliated trial | Research | Australia |
| Australian Breast Device Registry | http://www.breastsurganz.org/for-members/oncoplastic-breast-surgeons/ | Webpages | Australian Breast Device Registry | Accessed 2016 | Breast Surgery ANZ is one of the key stakeholders together with the Australian Society of Plastic Surgeons and the Australasian College of Cosmetic Surgeons, as well as the Department of Health, Therapeutic Goods Administration and Medical Technology Association of Australia. ABDR will be rolled out over the next 3 years with the goal of registering all surgical procedures involving an implantable breast device (i.e. implant or tissue expander). The purpose of this registry is to detect early warning signs of device failure as well as to evaluate variations in techniques that may increase the risk of complications. A minimal dataset has been developed that is aligned with the proposed addition to the Breast Quality Audit (BQA) on oncoplastic and reconstructive surgery. The data collection also includes long-term patient related outcomes using a questionnaire that is currently under development in an international collaborative project. In the future, ABDR may be linked to the BQA and will be a valuable resource for quality control and research. | Patient questionnaire under development | Registry under development | Australia |
| Australian Bureau of Statistics | http://www.abs.gov.au/AUSSTATS/abs@.nsf/mf/4399.0 http://www.abs.gov.au/ausstats/abs@.nsf/mf/4817.0.55.001 |
Webpages | Australian Bureau of Statistics | Accessed 2016 | The ABS has included a number of health status instruments such as the SF-36V1 health status survey (Australian Health Survey, 1995) and the Kessler 10 psychological distress scale in national surveys (1997 and thereafter), thereby providing Australian normative data for these commonly used generic and condition specific PROMs. | Generic, and condition specific | Population Health Survey - normative data for some PROMs | Australia |
| Australian Centre on Quality of Life, Deakin University | http://www.acqol.com.au/ | Webpage | Australian Centre on Quality of Life | Accessed 2016 | The Australian Centre on Quality of Life facilitates research into quality of life. It has a primary focus on overall quality of life and well-being and the Director, Prof Robert Cummins has developed patient reported measures of this type. It has an instrument resource page which provides links to recent articles about leading QOL/HRQOL/ PROMs measures which is a useful resource. Prof Richard Osborne at Deakin University (Public Health) also has a long track record of outcomes research concerning using PROMs and other measures, and papers concerning response shift effects in the measurement of PROMs. | Generic and condition specific | NA-Overview | Australia |
| Australian Commission on Safety and Quality in Health Care (ACSQHC) | http://www.safetyandquality.gov.au | Webpages | Australian Commission on Quality and Safety in Health Care | 2009 -2016 | Organisation concerned with quality and safety in health care in Australia; numerous reports were identified that related to health outcomes assessment (e.g. Variation, Guidelines, clinical registries, PREMs, funding a scoping exercise re PROMs currently etc.). Links to the ACSQHC publication ‘On the Radar’ were found, which referenced two articles discussing PROMs (2012/2103). | See below | NA - Overview | Australia |
| Australian Commission on Safety and Quality in Health Care (ACSQHC) | http://www.safetyandquality.gov.au/wp-content/uploads/2015/11/SAQ201_01_FrontSection_v10_FILM_TAGGED-4-Investigating-and-addressing-unwarranted-variation.pdf | Report | Australian Atlas of Healthcare Variation: Investigating and addressing unwarranted variation | 2015 | In 2015, the ACSQHC released the first ‘Australian Atlas of Healthcare Variation’. Significant variations in surgical intervention rates across Australia were identified. The recommendations noted that variation in the delivery of health care could be augmented by routine, nationally consistent use of PROMs for four particular conditions and procedures which included radical prostatectomy, lumbar spine surgery, knee pain and cataract surgery. | Recommending PROMs data collection for some key areas | National data collection | Australia |
| Australian Compensation Research Forum | http://achrf.com.au/program/ | Conference program | Australian Compensation Research Forum | 2016 | This forthcoming conference is hosted by the Institute for Safety, Compensation and Recovery Research and New Zealand's Accident Compensation Corporation. The conference program includes a number of speakers addressing outcomes evaluation including the use of PROMs. | Generic, condition specific | Research collections and some benchmarking initiatives | Australia and New Zealand |
| Australian Cystic Fibrosis Data Registry | https://www.cysticfibrosis.org.au/media/wysiwyg/CF-Australia/PDF_files/40023-ACFDR_Annual_Report_2013vweb.pdf | Report | Annual Report 2013 | 2013 | Benchmarks CF treatment centres nationally using clinical and health outcome related performance indicators. Does not appear to be including PROMs as yet. See AHHA entries. | NA | National | Australia |
| Australian Health Outcomes Collaboration | http://ahsri.uow.edu.au/ahoc | Webpage | The Australian Health Outcomes Collaboration | Accessed 2016 | Centre concerned with education and information dissemination about the health outcomes approach (including advice and training re PROMs) and which has undertaken numerous health outcomes research projects. From 1994 -2008 it convened 13 Australian Health Outcomes Conferences and convened a 2011 Seminar series with Dr John Ware. It has connections with international groups such as ICHOM, MAPI and ISOQOL. It was responsible for the Dementia Outcomes Measurement Suite (2007) and is involved in ICHOM dementia working group to develop a standard set of measures for dementia including PROMs. It has also developed some PROMs for incontinence and aged care measurement sets. | Information about, and use of health outcome indicators and generic, disease and condition specific PROMs in various research projects | Research data collections - Aged Care, Incontinence, Patient Experience | Australia |
| Australian Health Outcomes Collaboration (Sansoni) | http://www.pro-newsletter.com/images/PDF/pronl47_final.pdf | Article | News from the Australian Health Outcomes Collaboration | 2012 | Article for Mapi newsletter by J Sansoni (France/International). | Refers to generic and condition specific PROMs | See above | Australia |
| Australian Health Outcomes Collaboration (Sansoni) | https://ahsri.uow.edu.au/content/groups/public/@web/@chsd/documents/doc/uow134715.pdf | Paper | Health Outcomes: An Australian Perspective | 2016 | Overview of health outcomes measurement (indicators, PROMs etc.) and related health outcome benchmarking activities in Australia. Latest version of paper is August 2016. | Generic, disease and condition specific | NA - Overview | Australia |
| Australian Health Services Research Institute | http://ahsri.uow.edu.au | Webpage | Australian Health Services Research Institute | Accessed 2016 | Australian health services research centre with a number of sub-centres (e.g. AHOC, AROC, CHSD, PCOC, ePPOC) that undertake a range of health outcomes information dissemination, education, research and outcome benchmarking activities. | Generic, disease and condition specific | Sub-centres collect national and research data using PROMs | Australia |
| Australian Health Services Research Institute (Eagar) | ro.uow.edu.au/cgi/viewcontent.cgi?article=1620&context=ahsri | Research online presentation | Measuring outcomes in pain management | 2014 | Overview (K. Eagar) of the activities of AHSRI outcome benchmarking activities including AROC, PCOC, ePPOC which all include either the use of PROMs or a clinical rating scale. | Generic, disease and condition specific | National | Australia |
| Australian Healthcare and Hospitals Association (AHHA) | https://ahha.asn.au/system/files/docs/publications/ahha_submission_to_senate_select_committee_on_health_8_dec_2015.pdf | Submission | Australian Healthcare and Hospitals Association Submission to the Senate Select Committee on Health 8 December 2015 | 2015 | Suggests that health outcomes are measured using patient reported outcome measures (PROMs) and patient reported experience measures (PREMs). Other articles on the AHHA site address a focus on patient outcomes (e.g. health outcome related performance indicators, bundled payments in primary care) but generally does not appear to focus particularly on PROMs per se. | PROMs in general | NA - Overview | Australia |
| Australian Healthcare and Hospitals Association (AHHA) (Sims) | https://ahha.asn.au/sites/default/files/docs/policy-issue/geoff_sims.pdf | Presentation | Clinical Registries and Quality Improvement | 2014 | Geoff Sims from Australian Clinical Registries PTY LTD (private consultancy company) presentation at AHHA Quantum Leap conference in 2014. Notes that relatively few Australian clinical registries are capable of benchmarking outcomes nationally. For benchmarking sophisticated risk adjustment is required. Uses the example of benchmarking by the Cystic Fibrosis Registry driving quality and safety improvements. The example provided is using outcome related performance indicators for benchmarking and the presentation does not focus on PROMs. | Focus is benchmarking by Clinical Registries | Notes Cystic Fibrosis Australia data collection | Australia |
| Australian Heart Research | http://www.australianheartresearch.com.au/unique-australian-database-improve-coronary-heart-disease-outcomes/ | Web-media release | Unique Australian Database to Improve Coronary Heart Disease Outcomes | 2015 | Discusses the CADOSA SA registry/database - see CADOSA. | Disease specific | State | Australia, SA |
| Australian Institute for Health Innovation (AIHI) | http://www.nhpa.gov.au/internet/nhpa/publishing.nsf/Content/A2BC636E366C7FAFCA257C7800189056/$File/Final%20Report%20NHPA%20International%20Performance%20Indicators%20AIHI.pdf | Report | Final Report: Performance indicators used internationally to report publicly on healthcare organisations and local health systems. | 2013 | Report is mainly concerned with health indicators rather than PROMs but recommends bolstering patient experience indicators. | PROMs in general | NA - Overview | Australia |
| Australian Institute for Health and Welfare | http://www.aihw.gov.au/australias-health/2014/health-indicators/ | Report | Australia's Health 2014 | 2014 | Biennial report is mainly concerned with health indicators rather than PROMs but includes some wellbeing indicators and some global indices of health status/ health related quality of life (e.g. PROMs items). | Generic e.g. SF-36 and global items for health status | National: Population Health Data - some PROMs reported on (e.g. in health surveys) but holds databases relevant for data linkage studies (e.g. death index, hospital morbidity database) | Australia |
| Australian Longitudinal Study on Women's Health | http://www.alswh.org.au/ | Webpages | Australian Longitudinal Study on Women's Health | Accessed 2016 | (ALSWH) is a longitudinal survey of over 58,000 women in three age cohorts when surveys began in 1996. Using PROMs and other items ALSWH assesses women’s physical and mental health, as well as psychosocial aspects of health (such as socio-demographic and lifestyle factors) and their use of health services. ALSWH has provided data about the health of women across the lifespan, and helped to inform government policies across a wide range of issues. Although population health focussed numerous sub-studies, including data linkage studies with mortality and health service utilisation databases, reflect on quality of care e.g. falls, angina, depression etc. | Generic and condition specific | National | Australia |
| Australian Medical Association | https://ama.com.au/psychiatrists-newsletter/private-mental-health-alliance-pmha-update-4 | Media update | Private Mental Health Alliance (PHMA) Update | 2016 | Page reports on the outcome data collection and analysis for mental health being conducted by PHMA - similar to AMHOCN but private sector -implementation of a National Model for the Collection and Analysis of a Minimum Data Set with Outcome Measures for Private Hospital–based Psychiatric Services. Uses HoNOS (clinical rating) and patient reported MHQ-14. The PHMA Centralised Data Management Service produces annual reports related to activity and outcomes including PROMs. Also see pages relating to clinic indicator positions statements. | Refers to condition specific - mental health PROMs | National | Australia |
| Australian Mental Health Outcomes and Classification Network | http://www.amhocn.org/ | Webpages | About AMHOCN | Accessed 2016 | AMHOCN was established by the Australian Government to work collaboratively with the States and Territories and others in the mental health sector to implement routine outcome measurement in public mental health services. AMHOCN consists of three components: a data bureau responsible for receiving and processing information; an analysis and reporting component providing analysis and reports of submitted data; and a training and service development component supporting training in the measures and their use for clinical practice, service management and development purposes. | Condition specific - mental health | National | Australia |
| Australian Mental Health Outcomes and Classification Network | http://www.amhocn.org/publications/review-australian-mental-health-outcomes-and-classification-network | Report | Review of the Australian Mental Health Outcomes and Classification Network (AMHOCN). Australian Government Department of Health and Ageing | 2011 | Health Management Advisors (HMA) review of AMHOCN. The review found there is an ongoing need for the services AMHOCN provides. AMHOCN has made substantial contributions towards building an information foundation for measuring outcomes and developing mental health casemix concepts in Australia. AMHOCN is only one component of the national infrastructure established to support the sustainable implementation of an outcomes and casemix measurement as part of routine clinical practice. AMHOCN has played a key role in contributing to this realisation through national leadership around design of approaches to data management, analysis, reporting and sector development in relation to mental health outcome measurement and casemix classification. To remain relevant AMHOCN requires clear strategies to chart a future development path around outcome and casemix measurement as well as contributing to quality improvement strategies in the sector. HMA noted there was a need to support an increased use of outcome measures and benchmarking to improve practice and service management through some additional initiatives. | Condition specific (e.g. BASIS 32, Kessler 10) | National | Australia |
| Australian Mental Health Outcomes and Classification Network | http://www.amhocn.org/background/nocc-what-it | Webpages | Australian Mental Health Outcomes and Classification Network | Accessed 2016 | The National Outcomes and Casemix Collection (NOCC) measures contribute to the development of clinical practice, aiming to improve the quality of care for consumers of Australia’s public sector mental health services. Outcome measures can assist consumers in considering options for their care and treatment and support the development of a therapeutic relationship between the clinician and the consumer. The measures can also be used by clinicians to monitor the progress of the consumer, evaluate the effectiveness of treatments and thereby provide information that will assist decisions about clinical practices. The outcome measures can also be used by team leaders and service managers to better understand the needs of consumers, to plan for the allocation of resources and to identify where service improvements are required. Outcomes measures include clinical rating scales (e.g. HONOS) and States choose a consumer reported measure (e.g. Mental Health Inventory, BASIS-32, Kessler 10 Psychological Distress Scale). | Condition specific (e.g. BASIS 32, Kessler 10) | National | Australia |
| Australasian Rehabilitation Outcomes Centre | http://ahsri.uow.edu.au/aroc/index.html | Webpage and reports | Links to annual reports concerning outcome benchmarking of rehabilitation services in Australia and NZ | Accessed 2016 | The Australasian Rehabilitation Outcomes Centre (AROC) is a joint initiative of the Australian rehabilitation sector (providers, funders, regulators and consumers). With the support of its industry partners, AROC has been established by the Australasian Faculty of Rehabilitation Medicine (AFRM) of the Royal Australasian College of Physicians (RACP). Since 2002 it has been concerned with the outcomes benchmarking of rehabilitation services in Australia and NZ using a standardised clinical assessment (e.g. FIM) and there are 372 participating services. AROC has recently developed a patient experience survey for sub-acute rehabilitation services | Condition specific - FIM (clinician rated), patient satisfaction | National | Australia |
| Australian Orthopaedic Association National Joint Replacement Registry | https://aoanjrr.sahmri.com/background | Webpage | About NJRR | Accessed 2016 | The purpose of the AOANJRR is to define, improve and maintain the quality of care of individuals receiving joint replacement surgery. It collects a defined minimum data set that enables outcomes to be determined on the basis of patient characteristics, prosthesis type and features, method of prosthesis fixation and surgical technique used. The principal measure of outcome is revision surgery which identifies the need for further intervention. Combined with a careful analysis of the timing and reasons for revision this can be used as an accurate measure of the success or otherwise of a procedure. The AOANJRR also monitors mortality rates. Does not appear to collect PROMs but some data collections by participant surgeons also include PROMs - see TORU ACT | See TORU and OrthoACT below | National | Australia |
| Bowel Cancer Australia | https://www.bowelcanceraustralia.org/optimal-care-pathway | Webpage | Refers to ICHOM Standard Set for Colorectal Cancer | Accessed 2016 | Refers to ICHOM Standard Set for Colorectal Cancer with which it has been involved. | Disease specific and ICHOM standard set | National | Australia |
| Bureau of Health Information, NSW | www.bhi.nsw.gov.au/ | Webpage | NSW health system a top performer internationally despite high complication rates | Accessed 2016 | The role of BHI is to prepare and publish regular reports on the performance of the NSW public health system, including the safety and quality, effectiveness, efficiency and responsiveness of the system to the health needs of the people of NSW. Much of the work of BHI is concerned with health outcome related performance indicators that may be used in benchmarking the performance of hospitals in NSW and for international comparisons (Commonwealth Fund Survey). It also reports on the NSW Patient Survey program which reflects on patients experience of care and a number of surveys include a small number of items (e.g. 4) about PROs. | Some outcome related items in surveys concerning perceived outcomes from services received | State | Australia, NSW |
| Bureau of Health Information, NSW | http://www.bhi.nsw.gov.au/nsw_patient_survey_program | Webpage | NSW Patient Survey Program | Accessed 2016 | BHI also reports on the NSW Patient Survey program which reflects on patients' experience of care and a number of surveys include a small number of items (e.g. 4) about PROs. | Some outcome related items in surveys concerning perceived outcomes from services received | State | Australia, NSW |
| Cancer Institute NSW and Psycho-oncology Co-operative Research Group; (Luckett et al.) | http://www.pocog.org.au/docview.aspx?id=181 | Literature review | Determining optimal measures of health-related quality of life, anxiety and depression for evaluating progress in the psychosocial care of cancer patients in NSW | 2011 | CI NSW commissioned the Psycho-Oncology Co-operative Research Group (PoCoG ) to develop this report. It identified 50 PROMs used in RCTs re psychosocial interventions for cancer. Reviews the most commonly used PROMs in research for cancer. Recommends the Hospital Anxiety and Depression Inventory (HADS) and Functional Assessment of Cancer Therapy-General (FACT-G). |
Disease specific - HADS and FACT-G for cancer most commonly used and recommended | NA - Overview | Australia, NSW |
| Cancer Institute NSW and Sax Institute (Chen) | https://www.saxinstitute.org.au/wp-content/uploads/REPORT_PROMS-1.pdf | Report | The impact of routine collection of Patient Reported Outcome Measures on patients, providers and health organisations in an oncologic setting: a rapid review | 2012 | Discusses issues concerning the routine collection of PROM data in oncological settings (Chen J). | Disease specific | NA - Overview | Australia, NSW |
| Cancer Institute NSW (manages Clinical Cancer Registry Program) | http://www.cancerinstitute.org.au | webpages | Cancer Institute NSW (clinical registries) | Accessed 2016 | CI NSW Manages NSW Cancer Registry, NSW Pap Test Register, Australian Mesothelioma Registry, Breast Screen NSW, Heredity Cancer Registry, NSW Prostate Cancer Registry. CI also undertakes research around PROMs - see below. Mentions Prostate Cancer Outcomes Registry re inclusion PROMs data. | Disease specific | NA - Overview | Australia, NSW |
| Cancer Institute NSW | https://www.cancerinstitute.org.au/about-us/events/innovations-in-cancer-treatment-and-care/Past-conferences/Abstracts/expedited-patient-centered-outcome-measurement-dev | Presentation | Expedited patient-centered outcome measurement development for cancer care | 2014 | MD Anderson Cancer Center: Presentation concerns integration of PROMs data in electronic health record. Uses Porter (2010) Outcomes Heirarchy which includes PROMs. There are 4 outcomes sets combined with health electronic record (e.g. head and neck) and more are proposed. | Disease specific symptoms, functional status | NA - Overview | Australia NSW/USA |
| Cancer Research Economic Support Team at CHERE | http://www.crest.uts.edu.au/pdfs/EQ5D_AustralianWeights.pdf | Briefing sheet | Valuing quality of life for economic evaluations using your own trial data | 2013 | CHERE developed Australian utility weights for the EQ-5D rather than using algorithms based on UK or US health state preference data (Time Trade Off technique). CREST at CHERE have recently developed Australian utility weights for the EQ-5D-5L based on a discrete choice experiment method. To facilitate use of these of generic methods both as PROMs and as utility instruments for economic analysis Australian utility weights are essential. They are currently also developing an algorithm for developing Australian utility weights for the SF-6D instrument. | Generic - EQ-5D and EQ-5D-5L | NA | Australian NSW |
| Cancer Research Network Patient Reported Outcomes Special Interest Group | http://sydney.edu.au/cancer-research/intranet/interest_groups/prosig.php | Webpage | The PRO-SIG | Accessed 2016 | The PRO-SIG aims to provide a forum and focus for discussion of HRQOL/PRO-related issues and methods. It also facilitates the development of understanding and expertise in the measurement, analysis, interpretation and application of a broad range of PROs among CRN members. | Generic, disease and condition specific but mainly cancer related | NA-Overview | Australia, NSW |
| Centre for Advances in Epidemiology and Information Technology/Discover Quick | http://health.act.gov.au/sites/default/files//ACT_Health%20Review_2013-2014.pdf | Webpage | about CAEIT | Accessed 2016 | The main focus of the Centre for Advances in Epidemiology and IT has been the creation of a sustainable growth model for knowledge generation in healthcare. Known as Turning Research into Practice (TRIP), the program has a three-tier approach incorporating: 1) the research process; 2) generation of predictive models to improve individual patient outcomes; and 3) a focus on efficient service delivery using an evidence-based model. Collaborates with clinical groups such as TORU (see below) re outcomes of joint replacement. An IT model developed by CAEIT was developed into a commercial IT system called DiscoverQuick which is useful for monitoring patient health outcomes in routine practice and in real time. | Generic, disease and condition specific | Research Projects - some national | Australia, ACT |
| Centre for Big Data in Health | https://cbdrh.med.unsw.edu.au/ | Report | Annual Report 2015 | 2015 | “Big data” refers to datasets whose size or complexity is beyond the ability of traditional methods and tools to capture, store, manage, and analyse e.g. large scale electronic datasets which can link a range of data collections (medical service claims, hospital records, registry data, large scale survey data etc. which in some collections will include PROMs data). The organisation has a Health Services and Outcomes Unit: this undertakes research to identify variations and disparities in the use, outcomes and costs of health services, investigates the factors that drive these, and evaluates the outcomes of health policies and programs. | Datasets could include generic, disease and condition specific data | State and National - linked datasets | Australia, NSW |
| Centre for Health Economic Research and Evaluation | http://www.uts.edu.au/research-and-teaching/our-research/health-economics-research-and-evaluation/our-research/resear-0-0 | Webpages | Our Research | Accessed 2016 | Their research is largely health economic evaluation focused but with a number of PROMs related projects - Developing MAU instrument weights (a type of PROM used in economic evaluation e.g. SF-6D, EQ-5D, AQoL), economic evaluation of falls project, CREST-liaison with Cancer Australia QOL office, an HRQOL Prostate project where PROMs measures are used. | Generic, utility measures, some disease specific measures | Research Projects - some national | Australia, NSW |
| Centre of Research Excellence in Patient Safety - Clinical Registeries | http://www.registries.org.au/cqr.html | Webpage | Lists of clinical registries in Australia | Accessed 2016 | A somewhat dated list of Australian clinical registries some of which (e.g. cancer registries etc.) may collect PROMs data. | Disease specific | State and National Clinical Registry Collections | Australia |
| Centre for Social Research in Health, UNSW | https://csrh.arts.unsw.edu.au/event/addiction-related-patient-reported-outcome-measures/ | Conference flyer | Using PROMs to understand the experiences of people with drug or alcohol problems | 2016 | Seminar with Professor Jo Neale concerning the use of standardised PROMs to assess patient views and reported outcomes associated with drug and alcohol addiction. | Condition specific | NA - Overview | Australia, NSW |
| Centre of National Research on Disability and Rehabilitation Medicine (CONROD) | http://www.conrod.org.au/cms/ | Webpages | CONROD | Accessed 2016 | CONROD included the Queensland Trauma Registry until 2012 (when it merged with the Australian Trauma Registry) and it undertakes research on disability and rehabilitation which often includes the use of PROMs (e.g. pain, function, health status etc.). | Generic and condition specific | State - trauma registry to 2012 | Australia, Queensland |
| Centre for Ophthalmology, Eye and Vision Research (Flinders University) | http://www.flinders.edu.au/medicine/sites/ophthalmology/research/introduction.cfm | Webpages | Key Research Areas | Accessed 2016 | Measuring vision specific quality of life: loss of eyesight affects 500,000 Australians and costs the country nearly $10 billion a year in health and community support. While eye disease is the focus of considerable clinical research, the overall impact of the disease and treatment on the patient’s quality of life needs further exploration. The Flinders team is undertaking research to develop more effective ways of evaluating medical treatments from the patient’s perspective. The project is using new technology to develop an internet-based measurement system that is adaptable and far more accurate than current questionnaire programs. The aim is to make it valid for use across the English-speaking world. | Condition specific - Vision QOL under development | Reseach data collections | Australia, SA |
| Consumers Health Forum of Australia | https://www.chf.org.au | Presentation | Literature and Practice Review - Capturing, analysing and using consumers’ health experience narratives to drive better health outcomes. | 2014 | Discusses a range of approaches to collect data on patient experience including PROMs. Note that document was not available from website at time of publication. | PROMs in general | NA - Overview | Australia |
| Consumers Health Forum of Australia (Wells et al.) | http://www.slideshare.net/ConsumersHealthForum/patient-reported-outcomes-to-accelerate-change | Slide presentation; 2016 International Forum on Quality and Safety in Healthcare in Gothenburg, Sweden | Patient Reported Outcomes to Accelerate Change | 2016 | Peak consumer group in Australia with some focus on PROMs | PROMs in general | NA - Overview | Australia/ Canada |
| The Coronary Angiogram Database of South Australia (CADOSA) Registry (SA) | http://www.cadosa.org/wordpress/cadosa/about/ | Webpage | The Coronary Angiogram Database of South Australia (CADOSA) is a statewide quality improvement clinical registry program. | Accessed 2016 | The Coronary Angiogram Database of South Australia (CADOSA) is a statewide quality improvement clinical registry program. The CADOSA Project was established in 2011, and has been collecting consistent hospital-based data since 2012. A similar program in the United States called the National Cardiovascular Data Registry (NCDR)® has aided as a model framework for the development of the CADOSA registry. In addition, CADOSA collects the data recommended by the International Consortium for Health Outcomes Measurement (ICHOM) which includes both health outcome related indicators and PROMs data. Undertakes data comparisons with a similar Victorian registry. Note website currently under revision so also try http://www.australianheartresearch.com.au/unique-australian-database-improve-coronary-heart-disease-outcomes/ | Disease specific | State | Australia, SA |
| Criterion Conferences | https://www.criterionconferences.com/blog/government/would-you-like-to-go-to-the-prom-with-nick-black/ | Conference flyer | Measuring health outcomes conference | 2015 | Commercial conference group -Keynote Speaker - Prof Nick Black, PROMs Advisory Group, NHS. See UK table. | Generic and disease specific | NA-Overview but refers to international/ UK collections | Australia |
| Dementia Collaborative Research Centres - assessment and outcomes monitoring | http://www.dementia-assessment.com.au/purpose.html | Webpages and paper | Web page adaptation of Dementia Outcomes Measurement Suite (AHOC; AHSRI) | Accessed 2016 | Information pages about measures used for assessment and health outcomes monitoring of people with dementia - based on the Dementia Outcomes Measurement Suite (Sansoni et al., AHOC). | Generic and condition specific | NA - Overview but holds repository of generic and condition specific measures | Australia |
| DiscoverQuick | http://www.discoverquick.com/about.aspx | Webpages | About DiscoverQuick | Accessed 2016 | An IT model developed by CAEIT at the Canberra Hospital was developed into a commercial IT system called DiscoverQuick which is a web-based application useful for monitoring patient health outcomes in routine practice, across a number of sites and in real time. DiscoverQuick.com is the public web address for the Treonic Group. Treonic Pty Ltd is an Australian-based company dedicated to continuous quality improvement and technology. Recent projects where PROMs have been used include pain management and diabetes. | Generic, disease and condition specific | Australian IT application suitable for health outcomes monitoring and evaluation - holds data for some organisations | Australia, ACT |
| Faculty of Medicine, Monash University | http://www.med.monash.edu.au/assets/docs/creps/2015/promseventflyer_june2015.pdf | Conference flyer | Patient Reported Outcomes Measures (PROMS): new horizons in health-related quality of life improvements 25th and 26th June, 2015 | 2015 | Conference concerning PROMs. | Generic, disease and condition specific | NA - Overview | Australia, Vic |
| Flinders Centre for Ophthalmology, Eye and Vision Research, Flinders University | http://www.flinders.edu.au/medicine/sites/ophthalmology/research/news/news_home.cfm | Webpages | Ophthalmology | Accessed 2016 | This Centre is engaged in patient-centred measurement in ophthalmology and has integrated the use of patient-reported outcome measures as per the European Registry of Quality Outcomes for Cataract and Refractive Surgery (EUREQUO) database. Some staff have participated with ICHOM datasets. for cataracts. The Centre is also the home for the ANZ Registry of Advanced Glaucoma. | Disease specific | Registry and research collections | Australia, SA |
| The George Institute and Consumer's Health Forum | http://www.georgeinstitute.org.au/sites/default/files/putting-the-consumer-first-apr16.pdf | Report | Putting the cosumer first | 2016 | One recommendation of the report is to ensure that consumer experience drives the health system by routinely measuring and benchmarking patient experiences and outcomes across the health system, and making this information publically available to allow informed decision-making | PROMs in general | NA | Australia |
| Health Outcomes Australia | http://health-outcomes.org/ | Webpage | About HOA | Accessed 2016 | Commercial consultancy services group linked with ICHOM which promotes international benchmarking of health outcome indicators and PROMs - condition or disease specific across the continuum of care. | Generic, disease and condition specific | NA - Overview but refers to international datasets (ICHOM) | Australia |
| Health Outcomes Australia and Queensland Health (Sonderlund) | https://www.health.qld.gov.au/publications/clinical-practice/engagement/qcs-pp-1603-soderlund-1.pdf | Web presentation | Value in Healthcare – Some Global Perspectives | Accessed 2016 | Dr N. Sonderlund presentation (from HOE, associated with ICHOM) to Queensland Health on Value in Healthcare – Some Global Perspectives. Explains value in health care, outcome related benchmarking using health outcome related indicators and PROMs, discuss associated roles of clinical registries and ICHOM datasets. | Generic, disease and condition specific | see above | Australia/ International |
| Healthscope | http://www.healthscope.com.au/ | Webpages | My Healthscope - Accreditation, Quality and Safety | Accessed 2016 | Healthscope is Australia's second largest private hospital operator, with 46 hospitals. Healthscope publishes the results of its clinical performance and health outcomes on its website. One patient reported outcome was identified, the MHQ–14 (Mental Health Questionnaire), which asks questions about symptoms of fatigue, anxiety and depression and the impact of those symptoms in daily life. Also uses the FIM (clinical rating scale) for rehabilitation services. | Condition specific - mental health MHQ 14 and uses FIM clinical rating for rehabilitation | Hospital Group | Australia |
| Health Services Research Association of Australia and New Zealand | http://www.hsraanz.org/ | Webpage | About HSRAANZ | Accessed 2016 | The Health Services Research Association of Australia & New Zealand (HSRAANZ) supports and promotes the conduct and dissemination of applied research to improve the delivery and organisation of health services in Australia and New Zealand. It has a wide range of individual and corporate members from universities, research centres, government departments, independent government agencies, and consumer groups. The Association tries to bridge the gap between research and policy, as well as reflecting consumer issues. It holds a biennial conference which may include some papers on health outcomes and PROMs but It does not appear to have a major focus on PROMs. | Some conference papers may include PROMs | NA-Overview but doing an online data availability survey | Australia and New Zealand |
| Hospital Contribution Fund Research Foundation | https://www.hcf.com.au/about-us/media-centre/media-releases/2016/innovative-partnership-to-deliver-improved-patient-outcomes | Media release | Innovative partnership to deliver improved patient outcomes | 2016 | The HCF Research Foundation is working with ICHOM to develop two new outcome Standard Sets – in Oral Health and Pregnancy & Childbirth – to better measure health care results in these areas throughout Australia. The Foundation is also funding the implementation of the ICHOM Standard Set for Hip and Knee Osteoarthritis at Royal Melbourne Hospital to help improve outcomes for Australians with hip and knee joint pain. HCFRF is a strategic partner of ICHOM. | Generic, disease and condition specific | NA - media release | Australia and International |
| Institute for Safety, Compensation Research | http://www.iscrr.com.au/search?collection=iscrr-meta&query=patient+reported+outcomes&start_rank=1 | Webpages | Search results - patient reported outcomes | Accessed 2016 | The Institute for Safety Compensation and Recovery Research (ISCRR) is a research and innovation collaboration established by Monash University, WorkSafe Victoria (WorkSafe) and the Transport Accident Commission (TAC) in 2009. Numerous collaborative research activities focus on health outcomes and some include the use of PROMs | Generic and condition specific | Research data collections | Australia, Vic |
| International Centre for Allied Health Evidence - iCAHE Outcome Calculators | http://www.unisa.edu.au/Research/Sansom-Institute-for-Health-Research/Research/Allied-Health-Evidence/Resources/OC/ | Webpage | iCAHE Outcome Calculators | Accessed 2016 | Commercial tools developed by the Samson Institute for Health Research. The outcome measures contained within the CAHE Outcomes Calculator Version 5 have been selected on their psychometric properties (validity, reliability, sensitivity to detect change over time and clinical utility for patient populations with peripheral joint disorders). The outcome measures represent a range of aspects of functioning and/ or disability, which are measured at the level of body functions/ structure, the individual and society, as defined by the International Classification of Functioning. The international Centre for Allied Health Evidence website houses five outcome calculators: Basic outcomes calculator, musculoskeletal, neurological disorders, incontinence, chronic disease measurement. | Generic and condition specific | NA - Overview but includes some PROM tools | Australia, SA |
| International Consortium for Health Outcomes Measurement (ICHOM) - Australian Connections | http://www.ichom.org/ | Webpages | ICHOM | Accessed 2016 | ICHOM has developed a number of standardised data sets for health outcomes measurement across a range of diseases (e.g. prostate cancer, dementia etc.) which include various PROMs. ICHOM aims to promote 'value' based health care (which implies the use of PROMs) and also aims to promote international benchmarking using such datasets. A number of Australian organisations have some links with ICHOM which include Agency for Clinical Innovation NSW, Australian Health Outcomes Collaboration, Australian Women's and Children's Health Network, Bowel Cancer Australia, Clinical Ophthamology and Eye Health at the University of Sydney, CADOSA, DVA, Health Outcomes Australia, Hospital Contribution Fund, Movember Australia, Optometry & Vision Science at Flinders University, Ramsay Health Care Australia, Royal Melbourne Hospital, and Victorian Prostate Cancer Registry. Representatives from some of these organisations have participated in the development of the ICHOM datasets. Approximately 40 Australians attended the recent ICHOM conference in London. | Generic, disease and condition specific | Potential international comparisons | Australia |
| International Society of Quality of Life Research (and Australian Special Interest Group) | http://www.isoqol.org/about-isoqol | Webpage | About ISOQOL | Accessed 2016 | ISOQOL is a non-profit society to advance the scientific study of health-related quality of life and other patient-centred outcomes to identify effective interventions, enhance the quality of health care and promote the health of populations. ISOQOL fosters the worldwide exchange of information through: scientific publications, international conferences, educational outreach, and collaborative support for health related quality of life initiatives. ISOQOL is an international society with activities focused on promotion of high quality research in the science of health-related quality of life (HRQOL) measurement and patient-reported outcomes (PRO). An Australian SIG has recently been initiated. | Generic, disease and condition specific | NA -Overview | Australia/ International |
| International Society of Quality of Life Research (and Australian Special Interest Group) | http://www.isoqol.org/special-interest-groups/sig-overview | Webpage | Australian Special Interest Group | Accessed 2016 | The Australian Special Interest Group brings together Australian-based researchers in the field of quality of life research. Given geographical remoteness of Australian quality of life researchers from colleagues in the northern hemisphere, the SIG aims to support local researchers by facilitating communication and opportunities for collaboration and exchange of ideas. Contact details provided on page. | PROMs in general | NA - Overview | Australia |
| International Society of Quality of Life Research (and Australian Special Interest Group) | http://www.isoqol.org/UserFiles/file/Final1.13ISOQOLMinimumStandardsforPROMeasuresinCERandPCOR.pdf | webpage and paper (journal) | ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research | Accessed 2016 | Recommends important measurement standards for PROMs. | Generic, disease and condition specific | NA - Overview | International |
| Medibank Australia | https://www.medibank.com.au/content/about/corporate-responsibility/sponsorships/jcr%3acontent/mainContentArea/download_6/file.res/Summary-table-2015-Grants-MHRF.pdf | Webpages | Medibank Health Research Fund | Accessed 2016 | The Medibank Health Research Fund 2015 Research Grant Projects included a project run headed by Professors John McNeil and Just Stoelwinder at Monash University titled ‘Improving the measurement of patient reported outcomes’. The project is funded for $600,000 over 3 years. The project will measure the quality of hospital-based care experienced by patients. The project is aimed at improving the way this data is recorded and presented, and ultimately how it might assist clinicians and lead to improved processes in hospital settings. Important project outcomes will be: establishing and validating patient-reported outcomes; use of the data in establishing benchmarks for quality care in hospitals; identifying new and better ways to report results to clinicians, patients and funders; and improved quality of care and clinical effectiveness for Australian patients. Medibank has also funded the development of a patient experience survey for sub-acute rehabilitation patients by the Australasian Rehabilitation Outcomes Centre. | PROMs in general, unspecified as yet | National claims data and research collections | Australia |
| Melbourne Institute of Applied Economic and Social Research (Scott) | https://www.melbourneinstitute.com/downloads/economic_forums/June2015/Scott_Tony_30June15.pdf | Presentation | Towards value-based health care in Medicare | 2015 | Provides a brief overview of value based health care and associated payment approaches to enhance value. Considers four new options for Medicare - Best practice rebates for specialists, Value-based payments for GPs, Value-based payments for hospitals and Shared savings schemes. Although value-based health care usually implies the use of health outcome indicators and PROMs Scott does not really discuss how value is measured. | NA | Australia, Vic | |
| Movember Australia | https://www.ichom.org/files/whitepapers/ePROM-White-Paper.pdf | Webpage and paper | Movember Australia | Accessed 2016 and 2014 paper | Movember Australia provided funding for the project implemented by ICHOM: https://www.ichom.org/files/whitepapers/ePROM-White-Paper.pdf. Movember Foundation also contributed funding to the development of the Irish Prostate Cancer Registry. For Movember see https://au.movember.com/ | Electronic data capture for PROMs | NA - Overview but interested in electronic data capture of PROMs | Australia / International |
| Ophthamology Australia Collagen Corneal cross-linking registry and Save Sight Institute | www.optometry.org.au/blog-news/2016/1/5/collagen-corneal-cross-linking-registry/ | Webpage | Collagen corneal cross-linking registry | Accessed 2016 | Save Sight Institute’s Registries online platform analyses real life treatment outcomes globally. The first two modules were for macular degeneration and diabetic retinopathy, and a third module, keratoconus, has been added to the registries framework. The keratoconus module will collect and analyse real time clinical data and patient outcomes from current and emerging approaches to managing keratoconus. Collagen cross-linking will be the first treatment examined, making the module the world’s first large-scale assessment of collagen cross-linking. Clinical Professor Stephanie Watson, who heads the keratoconus module, is Sydney based. Although PROMs are used no details are provided. The Centre for Eye Research also collaborate with Save Sight Institute on the Australian Keratoconus Registry. Various patient-reported outcome questionnaires are documented related to eye / vision / ophthalmology. | Online registries associated with Save Sight capture PROMs, largely disease/condition specific | Australian involvement in international data collections re Vision | Australia/ International |
| Palliative Care Outcomes Centre | http://ahsri.uow.edu.au/pcoc/benchmarkmeasures/index.html | Webpage | About PCOC | Accessed 2016 | AHSRI Centre - PCOC undertakes benchmarking of outcome indicators relevant to palliative care services. The Palliative Care Outcomes Collaboration (PCOC) is a national program that utilises standardised clinical assessment tools to measure and benchmark patient outcomes in palliative care. Participation in PCOC is voluntary and can assist palliative care service providers to improve practice and meet the Palliative Care Australia (PCA) Standards for Providing Quality Palliative Care for all Australians. The PCOC dataset includes the clinical assessment tools: Palliative Care Phase, Palliative Care Problem Severity Score (PCPSS), Symptom Assessment Scale (SAS), Australia-modified Karnofsky Performance Status (AKPS) scale and Resource Utilisation Groups – Activities of Daily Living (RUG-ADL). There are 133 participating services. | Generic and condition specific - symptoms, pain, ADL | National | Australia |
| Palliative Care Outcomes Centre and Outcome Assessment and Complexity Collaborative (UK) | https://www.kcl.ac.uk/lsm/research/divisions/cicelysaunders/attachments/EAPC-Poster-JW---PCOC-and-OACC-Suites-of-Measures-P2-104-FINAL.pdf | Poster | International advances in outcome measurement in palliative care: One step closer to cross-national comparisons of routinely collected outcome data in palliative care | Accessed 2016 | Poster presentation re international comparisons of outcome data including PROMs (UK, Australia) at King's College London. | NA - overview but concerns international benchmarking | Potential international comparisons | Australia |
| Peter MacCallum Cancer Centre | https://www.petermac.org/sites/default/files/media-uploads/ONTrac_Project.pdf | Presentation | Survivorship Connections: A Pilot Model of Post Treatment Shared Survivorship Care for Adolescent and Young Adult (AYA) Cancer Patients in Victoria. | Accessed 2016 | The Peter MacCallum Cancer Centre has implemented a project Survivorship Connections: A Pilot Model of Post Treatment Shared Survivorship Care for Adolescent and Young Adult (AYA) Cancer Patients in Victoria. This project included several patient-reported outcome measures including: the AYA Survivorship Screening Tool, AQoL-6D, SF-12 and Psychological Evaluation Questionnaire (PEQ). | Generic and condition specific | Research collection | Australia, Vic |
| Population Research and Outcomes Studies Unit (SA) | https://health.adelaide.edu.au/pros/ | Webpage | Population Research and Outcome Studies | Accessed 2016 | This unit has now moved to the University of Adelaide from the SA Health Department. It aims to provide the best available epidemiological evidence on the impact of, and outcomes relating to, both established and emerging relevant health and wellbeing priorities and to provide the best available epidemiological information on priority chronic diseases/conditions and their determinants. Has used SAHOS in 2008 to provide latest norms for SF-36V2 instrument which is a commonly used generic PROM. |
Generic and condition specific | Population Health surveys - provision of normative dat re PROMs | Australia, SA |
| Private Mental Health Alliance | https://pmha.com.au/ | Webpages | Private Mental Health Services in Australia | Accessed 2016 | Reports on the outcome data collection and analysis for mental health being conducted by PHMA - similar to AMHOCN but private sector - implementation of a National Model for the Collection and Analysis of a Minimum Data Set with Outcome Measures for Private Hospital–based Psychiatric Services. Uses HoNOS (clinical rating) and patient reported MHQ-14. The PHMA Centralised Data Management Service produces annual reports related to activity and outcomes including PROMs. Note that PMHA website was offline at time of publication. | Condition specific - MHQ-14 | National - private sector | Australia |
| Prostate Cancer Outcomes Registry, Monash University | http://www.med.monash.edu.au/sphpm/depts-centres-units/pcor-anz/ | Webpage | Prostate Cancer Outcomes Registry | Accessed 2016 | The primary aim of the Prostate Cancer Outcomes Registry - Australia and New Zealand (PCOR-ANZ) is to improve the quality of care provided to men with prostate cancer. Information from the registry will be used to monitor diagnosis, treatment, complications, and long term quality of life outcomes. This information will be used to help identify trends and whether gaps exist in service provision. Appears to be still under construction, but will include some PROMs data. | Disease specific | National and international | Australia and NZ |
| Prostate Cancer Outcomes Registry, Urological Society ANZ | http://www.usanznsw.org/wp-content/uploads/2015/10/USANZ-NSW-ASM-A-Brooks-and-S-Teuss-November-2015.pdf | Presentation | Introducing the NSW arm of the PCOR ANZ | Accessed 2016 | Presentation by A/Prof Andrew Brooks about the development of PCOR ANZ and the NSW registry component. Presents some interesting Victorian benchmarking data with regard to health outcomes indicators. PCOR ANZ will include a disease specific PROM and in the future benchmarking including PROM data should be possible. | Disease specific - EPIC 26 | National and international | Australia and New Zealand |
| Ramsay Health Care | http://www.ramsayhealth.com/~/media/Documents/RHC/Performance%20Report/Reports/2014/PSandQ%20Report%20AUS2014.ashx?la=en | Report | Patient Safety & Quality Report | 2014 | Patient safety and quality report for private sector hospital group - largely health outcome related indicators reported as per national standards for safety and quality. Does monitor patient reported satisfaction. Mark Page and Malcolm Passmore attended recent ICHOM conference and they have an ICHOM committee flagging their interest in health outcomes benchmarking and the use of PROMs. Ramsay propose to collect PROMs data using ICHOM standard sets for prostate cancer, low back pain, depression and anxiety. | Generic and disease specific: ICHOM standard sets | Hospital Group | Australia |
| South Australian Health Omnibus Survey | http://www.harrisonresearch.com.au/health_omnibus.php | Report | A Population Profile of Quality of Life in South Australia | 2009 | A user pays population health survey (Harrison Research) where normative data for commonly used PROMs can be collected. It was used to collect Australian normative data in 2004 for the SF-36V2 (Measuring Incontinence in Australia, 2006) and in 2008 - see Population Research and Outcome Studies. | Generic, disease and condition specific | Population Health surveys - provision of normative data re PROMs | Australia, SA |
| SA-Vic Prostate Cancer Registry | http://dspace.flinders.edu.au/xmlui/handle/2328/36179 | Webpage and journal | Development of South Australian-Victorian Prostate Cancer Health Outcomes Research Dataset. | 2016 | A total of 13,598 de-identified records of men with prostate cancer diagnosed and consented between 2008 and 2013 in South Australia and Victoria were merged into the SA-VIC PCHORD. SA-VIC PCHORD contains detailed information about socio-demographic, diagnostic and treatment characteristics of patients with prostate cancer in South Australia and Victoria. Quality of life/ Proms data is also included but different historical approaches to data collection currently prevents the PROMs data from being merged but they will use EPIC-26 measure in the future. | Disease specific, EPIC 26 | Multi-State | Australia, SA and Vic |
| Sax Institute HARC forum | https://www.saxinstitute.org.au/harc-forums/harc-forum-on-patient-reported-outcome-measures/ | Event summary | HARC Forum: Patient experience and patient reported outcome measures | 2016 | The HARC partners recently welcomed Mr Dan Wellings, Head of Insight and Feedback at NHS England. Mr Wellings spoke about the NHS approach to patient experience and patient reported outcome measures. His presentation was followed by presentations from Dr Jean-Frederic Levesque, Chief Executive of the Bureau of Health Information and Dr Karen Luxford, Director, Patient Based Care of the Clinical Excellence Commission. | PROMs in general | NA - Overview | Australia, NSW |
| Sax Institute 45 and up Study | http://www.saxinstitute.org.au/our-work/45-up-study/ | Project summary | The 45 and Up Study | Accessed 2016 | The 45 and Up Study has recruited 250,000 NSW men and women into a longitudinal study on ageing. The study allows for data linkage with other databases concerning health service utilisation and mortality. Includes PROMs such as health status (e.g. from the SF-36) and function. The study aims to answer important health and quality of life questions and help manage and prevent illness through improved knowledge of conditions such as cancer, heart disease depression, obesity and diabetes. Similar approach to ALSWH. | Generic | State | Australia, NSW |
| Sax Institute | https://www.saxinstitute.org.au/wp-content/uploads/REPORT_PROMS-1.pdf | Commissioned report | The impact of routine collection of Patient Reported Outcome Measures on patients, providers and health organisations in an oncologic setting: a rapid review | 2012 | Report by Jack Chen, Simpson Centre report for Cancer Institute brokered by Sax Institute. | See Cancer Institute | NA - Overview | Australia, NSW |
| Simpson Centre, UNSW | http://aihi.mq.edu.au/sites/default/files/_local_upload/others/AIHI_Symposium-Chen_Simpson.pdf | Presentation | Also see Cancer Institute | Accessed 2016 | Centre which undertakes some health outcomes and PROMs related research in Australia including a review of PROMs, the 45 and up study and the Longitudinal Study of Australian Children - see ACI and Sax Institute entries. | PROMs in general | NA - Overview | Australia, NSW |
| Transport Accident Commission, Victoria | https://www.tac.vic.gov.au/ | Webpages | Traffic Accident Commission, Vic | Accessed 2016 | The TAC’s goals have evolved to including monitoring performance in relation to the Client Experience, and to a broader focus on understanding and measuring Client Outcomes. A comprehensive internal program of research has been developed to inform continuous improvement against Client Experience, and to support the TAC’s understanding of Client Outcomes. The most recent development in this program was a longitudinal client outcome study. The study developed and implemented by the TAC was a multi-cohort longitudinal study that tracked the experience and outcomes of clients as they returned to health (and work, where relevant) following a transport accident. Clients were interviewed four times over a two-year period post-accident. The questionnaires used in the study covered pre-accident health and vocational status to accident circumstances and injury characteristics to post-accident health, vocational status, psycho-social factors and environmental considerations. | Generic - health status and psychosocial measures | State, Research collections | Australia, Vic |
| Trauma and Orthopaedic Research Unit ACT | http://www.health.act.gov.au/datapublications/research/trauma-and-orthopaedic-research/research-capacity | Webpages | Trauma and Orthopaedic Research Unit ACT- Research Capacity | Accessed 2016 | This research group holds a joint replacement database commenced by Professor Paul Smith in 1988 and since 2010 contributed to by OrthoACT surgeons in the ACT. PROMs data (e.g. Oxford Hip and Knee Scores) are collected before and after treatment. It recently collaborated with Centre for Advances in Epidemiology (Shadbolt et al. 2015) in a study that indicated that Oxford Hip and Knee scores were predictors of subsequent joint outcomes and that at 1 year post the initial arthroplasty both hip and knee revision were dependent on the patients' earlier function and pain scores. There is also an iFracture data collection system. | Disease specific, hip and knee scores; symptoms - pain | Research collections | Australia, ACT |
| WorkSafe Victoria | http://www.worksafe.vic.gov.au/health-professionals/treating-injured-workers/outcome-measures | Web page | Outcome Measures | Accessed 2016 | Outlines a range of patient reported and clinician reported health outcomes scales for health professional use; refers to similar material from Transport Accident Commission, Australian Physiotherapy Association, UK National Centre for Health Outcome Development, Center for Outcome Measures for Brain Injury. | Condition specific | NA - Overview | Australia, Vic |
| Victoria - Department of Health and Human Services | https://www2.health.vic.gov.au/about/health-strategies/cancer-care/cancer-projects/victorian-cancer-survivorship-program | Webpage | Victorian Cancer Survivorship Project | Accessed 2016 | Positive Change for Life cancer survivorship pilot (part of Victorian Cancer Survivorship Program at The Alfred) - Patient-reported outcome measures were recorded at baseline and following 6 and 12 months of project participation and included quality of life scales, fatigue assessments, self-efficacy scores, physical activity and nutrition questionnaires. | Generic and disease specific, symptoms and psychosocial measures | Research collection | Australia, Vic |
| Victoria - Department of Health and Human Services | https://www2.health.vic.gov.au/hospitals-and-health-services/funding-performance-accountability/performance-monitoring | Report | Victorian health service performance monitoring framework 2016–17 and changes proposed and included | Accessed 2016 | High-performing health services: Victorian health service performance monitoring framework 2015–16' notes current state of PROMs and planned future use. The Framework includes the measurement of patient experience (Victorian Health Experience survey), health outcomes, efficiency and effectiveness but the focus is largely on health outcome related performance indicators rather than PROMs. | Health outcome related performance indicators | NA - Overview | Australia, Vic |
| Victorian Comprehensive Cancer Centre | https://www.victorianccc.org.au/our-work/living-with-cancer/ | Webpage | Living with Cancer | Accessed 2016 | In 2014, fieldwork was completed for a state-wide Patient Reported Outcome Measures (PROMs) survey which aimed to assess the quality of life of cancer survivors in Victoria with five different cancer types and at three different time points since diagnosis. The NHS PROMs questionnaires for breast, bowel, prostate cancer and non-Hodgkin lymphoma were utilised, and in addition the VCCC developed a fifth questionnaire for survivors of melanoma. Eligible participants were identified and recruited through the Victorian Cancer Registry and the survey data is currently being analysed. The data will be used to assess the contribution that demographics, disease-related and other factors have on quality of life to inform future programs. | Disease specific - NHS Cancer Surveys | State | Australia, Vic |
| Victoria's Health Hub | https://www2.health.vic.gov.au/mental-health/practice-and-service-quality/service-quality/measuring-outcomes-in-mental-health | Webpage | Measuring outcomes in mental health services | Accessed 2016 | Under the National Mental Health Plan, all clinical mental health services in Victoria must routinely submit consumer outcome ratings through a national collection protocol known as the National Outcomes and Casemix Collection (NOCC). The NOCC provides a coherent picture of mental health outcomes in each state and territory, which can be used to measure clinical effectiveness across different service sectors and age cohorts. | Condition specific | State and National | Australia, Vic - see AMHOCN |
| Victorian Orthopaedic Trauma Outcomes Registry (Monash University) | http://www.votor.org.au/ | Webpage | About VOTOR | Accessed 2016 | The aim of the registry is to collect information about orthopaedic injuries, treatment, complications and outcomes based on admissions to the adult Major Trauma Service (MTS) hospitals in Victoria. The Injury Burden and Outcomes Program of VOTOR is to facilitate and conduct research focused on quantifying the burden of orthopaedic trauma, and validating and improving methods for measuring burden and outcomes (including health-related quality of life). | Generic - EQ-5D; symptom - pain | State | Australia, Vic |
| Victorian Prostate Cancer Clinical Registry | http://pcr.registry.org.au/Files/Annual%20Reports/Vic%20PCR%20Five%20Year%20Report.pdf | Report | Victorian Prostate Cancer Registry 5-Year Report | 2015 | Clinical prostate cancer quality registry which includes PROMs (SF-12 and 6 disease specific questions re complications) covering an estimated 75–80% of the Victorian population through 33 different health services or clinics, enrolling now nearly 10,000 men. Oversees national registry PCOR-ANZ, collaborates with Irish Registry, participates in Movember projects and associated with ICHOM. Undertakes benchmarking by participating centres re clinical indicators and reports PROM data overall for registry participants. Private healthcare providers such as Epworth healthcare in Victoria participate in the registry. | Generic (sf-12) and 6 disease specific (items from EPIC-26) | State/National | Australia, Vic |
| WA Association for Mental Health (Wilson et al.) | https://waamh.org.au/assets/documents/reports/waamh-literature-and-concept-summary.pdf | Literature review | Outcomes measurement of community based mental health services in WA | 2011 | Reviews outcomes measures which include health outcome performance indicators as per 4th National Mental Health Plan, PROMs and clinical ratings as per AMOHCN, and a number of PROMs that could be used to measure quality of life and social inclusion. | Generic, condition specific and health and welfare outcome indicators | State/National | Australia, WA |
| New Zealand | ||||||||
| Australasian Mental Health Outcomes and Information Conference | http://www.tepou.co.nz/outcomes-and-information/amhoic/35 | Website | Conference information | Accessed 2016 | AMHOIC is held every two years, alternating between New Zealand and Australia. It is delivered by Te Pou and the Australian Mental Health Outcomes and Classification Network (AMHOCN). It has a focus on outcome related indicators, standardised clinical assessments (e.g. HoNOS) and condition specific PROMs | Outcome indicators and PROMs in general | Relates to national data collections | Australia & NZ |
| Australasian Rehabilitation Outcomes Centre AROC (NZ data) | http://ahsri.uow.edu.au/aroc/whatisaroc/index.html | Website | An Australasian benchmarking system to improve clinical rehabilitation outcomes in both the public and private sectors | Accessed 2016 | The Australasian Rehabilitation Outcomes Centre (AROC) is a joint initiative of the Australian rehabilitation sector (providers, funders, regulators and consumers). With the support of its industry partners, AROC has been established by the Australasian Faculty of Rehabilitation Medicine (AFRM) of the Royal Australasian College of Physicians (RACP). Since 2002 it has been concerned with the outcomes benchmarking of rehabilitation services in Australia and NZ and there are 372 participating services. AROC has recently received funding to develop a patient experience survey for sub-acute rehabilitation services. | Condition specific - FIM (clinician rated), patient experience | Australasian benchmarking data | Australia & NZ |
| Centre for Person Centred Research, Health and Rehabilitation Research Institute | https://cpcr.aut.ac.nz/research-clusters/outcome-measurement-research | Website | Outcome Measurement Research | Accessed 2016 | The centre for Person Centred Research's purpose is to produce and promote research in the fields of disability, rehabilitation and diversity. The centre has a focus on outcomes, however, the only reference to PROMs on the website is in the academic literature. | PROMs in general | NA | NZ |
| Centre for Person Centred Research, Health and Rehabilitation Research Institute (Kersten) | http://www.aut.ac.nz/__data/assets/pdf_file/0005/496544/Paula-Kersten.pdf | Presentation | Person centred outcomes data in healthcare | Accessed 2016 | Presentation regarding Healthcare Quality Study - five different patient groups evaluated overall assessment of their healthcare (satisfaction). Gives an overview of patient reported outcomes with examples, and the pros and cons of using PROMs. Also they have conducted separate research regarding patient reported benefits of hydrotherapy for arthritis which has included some PROMs development. | PROMs in general | NA | NZ |
| Health and Disability Commissioner | http://www.hdc.org.nz/media/275826/mental%20health%20services%20productivity%20improvement-best%20practice%20review.pdf | Report | Mental Health Services Productivity Improvement: Best Practice Review | 2014 | PROMs development only mentioned in the report as part of a 'best practice' approach the Ministry of Health considers fits within the KPI program context. |
PROMs in general | NA | NZ |
| Health Quality & Safety Commission New Zealand | http://www.hqsc.govt.nz/assets/General-PR-files-images/Transparency-position-paper-evidence-review-appendices-Mar-2016.pdf | Report | Evidence review and position paper on the transparency of information related to health care interventions | 2016 | PROMS mentioned in the report as a 'useful area for further development', but with no further expansion of examples of how PROMS are used in NZ. | PROMs in general | NA | NZ |
| Massey University (Te Kani Kingi and Mason Durie) | https://www.massey.ac.nz/massey/fms/Te%20Mata%20O%20Te%20Tau/Reports%20-%20Te%20Kani/T%20Kingi%20&%20M%20Durie%20Hua%20Oranga%20A%20maori%20measure%20of%20mental%20health%20outcome.pdf?182AA801936E722103B26B5884B53285 | Report | “Hua Oranga” A Maori Measure of Mental Health Outcome | 2000 | Report on the development of the "Hua Oranga" Maori mental health outcome measure. No information in this early report re the implementation or use of the tool. | Condition specific | Part of mental health collection | NZ |
| National Ethics Advisory Committee, NZ (Derrett) | https://neac.health.govt.nz/system/files/documents/publications/bookingsystemselectiveservices.pdf | Report | Booking Systems for Elective Services in New Zealand: Literature scan to identify any ethical issues of national significance | 2005 | A 2005 review of the booking system for elective surgery in NZ which used Clinical Priority Assessment Criteria tools to form priority scores to manage waiting lists for elective/non-urgent surgery. These criteria considered the patient's need and likelihood to benefit from the surgery (e.g. gain a worthwhile health outcome) as well as clinical judgement. Some CPAC tools, such as for cataract surgery, included patient reported data (e.g. items concerning their condition and its effect on their function). An aim of CPAC prioritisation scheme at the time was to also examine the health outcomes of patients that did and did not receive surgery. An early application of PROMs. The cataract priority tool is mentioned in Devlin and Appleby (2010) and in Appleby, Devlin and Parkin (2015). Derrett concluded the scheme had issues with the consistency of its application which did raise equity concerns. The priority system has since been substantially modified. | PROMs in general | Waiting list data | NZ |
| The New Zealand Mental Health and Addictions KPI Programme | http://www.mhakpi.health.nz/Portals/0/Documents/Data/Public%20Data%20Workbooks/Adult/Adult%20BF1%20FY%202015%20Workbook%2020160505%20-%20Final%20on%20the%20web.pdf?ver=2016-05-05-154729-713 | Report | Key Performance Indicator Framework for New Zealand Mental Health and Addiction Services | 2016 | The New Zealand Mental Health and Addictions KPI Programme is a provider-led initiative, designed to bring about quality and performance improvement across the Mental Health and Addictions sector (the Sector). It provides Adult, Child and Youth and Adult Forensic Mental Health clinicians, managers, planners, funders and service users with access to a comprehensive suite of nationally comparative data. The specific goals of the KPI Programme are to implement the New Zealand KPI Benchmarking Framework into all DHBs and partnering NGOs to ensure sustainable benchmarking across the sector. Like AMHOCN it collects data on the HoNOS clinical rating scale but most indicators appear to be health outcome related performance indicators. | Condition specific clinical rating scale | National | NZ |
| New Zealand Orthopaedic Association | http://nzoa.org.nz/nz-joint-registry | Website | NZ Joint replacement registry | Accessed 2016 | A series of patient questionnaires for patients who have had hip, knee, ankle, shoulder or elbow surgery. Appear to be recording patient reported outcomes, although there is no reference to the questionnaires as 'PROMs'. | Disease specific | Registry data | NZ |
| Programme for the Integration of Mental Health Data (PRIMHD) | http://www.health.govt.nz/nz-health-statistics/national-collections-and-surveys/collections/primhd-mental-health-data | Website | PRIMHD-mental health data | Accessed 2016 | PRIMHD data is used to report on what services are being provided, who is providing the services, and what outcomes are being achieved for health consumers across New Zealand’s mental health sector. Most indicators are health outcome related performance indicators but standardised clinical assessments are used (e.g. HoNOS) as well as some patient reported outcome measures. | condition specific | National | NZ |
| Royal Australasian College of Surgeons | https://www.surgeons.org/media/24184626/2016-5-27-provisional-programme-web.pdf | Conference | Surgery 2016: Getting the Measure of Outcomes | 2016 | Royal Australasian College of Surgeons - provisional program for August 2016 conference. Introduction to surgeons re Health Outcome Related performance Indicators rather than PROMs. Presentation by King to encourage interest in PROMs, but no evidence of PROMS implementation. | PROMs in general | NA | Australasian |
| Te Pou NZ | http://www.tepou.co.nz/outcomes-and-information/mental-health-outcome-measures/28 | Website | Mental Health Outcome Measures | Accessed 2016 | New Zealand has adopted a mental health outcome measurement framework. The HoNOS is used by health professionals to measure patient outcomes and patients encouraged to view HoNOS ratings and discuss results with health professionals on a regular basis. Note: not purely a 'clinician rated outcome measure' as patients discuss the ratings the clinician has determined. | Condition specific | National mental health collection | NZ |
| Te Pou NZ | http://www.tepou.co.nz/uploads/files/resource-assets/Taku-Reo-Taku-Mauri-Ora-Tool-factsheet.pdf | Website | Tāku Reo, Tāku Mauri Ora measure | Accessed 2016 | The Tāku Reo, Tāku Mauri Ora (My voice My life) measure is a self-assessed Maori and non-Maori service user outcome measure for use in New Zealand mental health services. The measure has 65 questions. They are divided among 11 domains. There are a further 14 questions for Maori tāngata whaiora (service users). The domains reflect areas that tāngata whaiora/service users across various cultures identified as important for recovery. Some examples are relationships, day-to-day life, physical health and culture. The tool can be completed by the service user themselves or with the help of a support person or family member. | Condition specific and culturally specific PROMs | National mental health collection | NZ |
| Te Pou NZ | http://www.tepou.co.nz/outcomes-and-information/alcohol-and-drug-outcome-measure/117 | Website | Alcohol and Drug Outcome Measure (ADOM) | Accessed 2016 | ADOM provides Maori service users with a way to rate and track key areas of change during their treatment journey. This includes changes in use of alcohol and other drugs, lifestyle and wellbeing and satisfaction with treatment progress and recovery. Tāngata whai ora (service users) are supported by AOD practitioners to regularly rate how they are doing and to view the results using the ADOM feedback wheel. Although most of the ADOM is completed by the clinician in consultation with the client, section 3 on the ADOM, the recovery questions (19 and 20) are direct consumer rated questions. | Condition specific and culturally specific PROMs | Unclear | NZ |
| Te Rau Matatini Ltd. | http://www.oradatabase.co.nz/index.php | Website | Maori Outcome reporting and analysis database | 2010 | The Outcomes Recording Analysis (ORA) database is an online tool (database, user interface and reporting) for Maori Mental health providers to collect, administer and interpret Hua Oranga information. The data that is entered into the ORA database is direct from the Hua Oranga questionnaire sets that mental health providers use manually. Data is stored and updated in the database by a designated data entry person from the individual service providers. | Condition specific and culturally specific PROMs | National mental health collection | NZ |
| University of Otago (Chen) | https://ourarchive.otago.ac.nz/handle/10523/2588 | Thesis (abstract) | A novel set of condition-specific quality of life questionnaires in elective general surgical patient prioritization and outcome assessment | 2012 | This thesis covers the development, validation, and application of the “Otago Condition-Specific Questionnaire” (OCSQ). The OCSQ is a standardized set of condition-specific QOL instruments tailored for general surgery, and for some common elective general surgical conditions (e.g. hernias, varicose veins etc.). The OCSQ was developed based on an extensive conceptual model and it was shown to be practical, valid, reliable and responsive. The OCSQ was used to assess the PROs in a large cohort of patients over a three-year period following elective general surgery. The OCSQ was shown to be valuable in monitoring treatment efficacy, in identifying patients with suboptimal QOL outcome, and in facilitating the comparison of PROs between different conditions and treatments. The OCSQ was also used to explore how well QOL was represented in the patient’s priority for accessing elective general surgery. It was found that QOL had no bearing on the patient’s priority status. | Condition specific (general surgery) | Research collection | NZ |
| Group/author | Web | Type of 'grey' literature | Title | Date | Summary | Type of PROM | Data Collection type (if applicable) | Country |
| United Kingdom | ||||||||
| Arthritis Research UK | www.arthritisresearchuk.org | Information paper | Musculoskeletal patient reported outcome measure (M-PROM) | 2012 | This paper discusses the planned development of a musculoskeletal patient reported outcome measure (M-PROM). The tool, being developed by Arthritis Research UK will have utility for patients, health policy makers and health-care professionals and it will be used across a broad range of musculoskeletal disorders in the future. Part of the development phase included a workshop held in 2012 with a range of key stakeholders with expertise to help shape future tool development. The tool is still under development. | Disease specific | Proposed | UK |
| Arthritis Research UK | www.arthritisresearchuk.org | Webpages | Patient Reported Outcome Measures: Search | Accessed 2016 | Arthritis UK funds a range of research activities to assess outcomes using PROMs and to develop disease specific PROMs. Over 100 activities were identified. | Disease specific | NA | UK |
| BMJ Blogs (Devlin, Appleby and Parkin) | http://blogs.bmj.com/bmj/2014/12/03/nancy-devlin-john-appleby-david-parkin-why-has-the-proms-programme-stalled/ | Blog | Why has the PROMs programme stalled? | 2014 | Blog by Devlin, Appleby and Parkin. Problems with NHS restructuring in 2014 appear to have hindered the proposed expansion of the PROMs Initiative. | PROMs in general | NA | UK |
| BMJ Outcomes | http://outcomes.bmj.com/BMJ%20Outcomes%20Article%20Collection.pdf | Compendium of articles | BMJ Outcomes Inaugural Collection | 2015 | A compendium of articles, largely from the UK and Europe, commenting on outcomes initiatives in various countries and issues concerning value based health care and outcome measurement. | PROMs in general | NA | UK |
| The Communication Trust | https://www.thecommunicationtrust.org.uk/media/12886/slcn_tools_evaluating-outcomes_1_.pdf | Webpages | Speech, language and communication needs Evaluating outcomes | 2011 | This report provides an overview of a suite of tools for commissioners of speech, language and communication services. It is a ‘beginner’s guide’ to outcome evaluation but raises the issue of measuring social/welfare outcomes and not just health outcomes. | Condition specific | NA | UK |
| Department of Health/ NHS | http://digital.nhs.uk/proms | Webpages | Patient Reported Outcome Measures | 2016 | Since 2009 the PROMs programme collects mandatory data from providers of elective surgery for hip and knee replacement, varicose vein surgery or groin hernia surgery. Both generic (EQ-5D) and disease specific PROMs are collected. There are some additional pilots in the UK PROMs programme - coronary revascularization, long term conditions (primary care), cancer survivors and dementia. | Generic and disease specific - elective surgeries | National | England, UK |
| Department of Health/ NHS | http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_092625.pdf | Report | Guidance on the routine collection of Patient Reported Outcome Measures (PROMs) | 2009 | This is the original guidance document to support the introduction and use of PROMs in data collections to assess variations in outcomes across providers for 4 areas of elective surgery in the UK. Both generic (EQ-5D) and disease specific PROMs are collected. The PROMs programme collects data on elective surgery for hip and knee replacement, varicose vein surgery and groin hernia surgery. This is an archived document and it should be noted that methods have been refined since the program has been implemented. | Generic and disease specific - elective surgeries | National | England, UK |
| Department of Health/ NHS | https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/267042/9284-TSO-2900701-PROMS-1.pdf | Report | Quality of Life of Cancer Survivors in England: Report on a pilot survey using Patient Reported Outcome Measures (PROMS) | 2012 | This survey was part of the National Cancer Survivorship Initiative (NCSI) and the survey was conducted by Quality Health in conjunction with three cancer registries in England. Used generic (EQ-5D) disease specific (FACT) condition specific (mental health items) and experience of care items. Demonstrated the feasibility of collecting PROMs from cancer patients and survivors apart from the very old group (85+ years). Analyses suggested provider comparisons in the area of prostate cancer may be worthy of further exploration. | Generic, disease and condition specific | Research collection - national | England, UK |
| Department of Health/ NHS | https://www.england.nhs.uk/statistics/statistical-work-areas/proms/cardiac-update/ | Project Update | Cardiac revascularisation PROMs pilot project update | 2016 | Approximately 6000 patients with heart disease agreed to participate in the pilot study, and shared how they felt before their operation and, of the 6000, 4500 gave information about how they felt after their operation. Unclear re measures but one might assume the EQ-5D was included with some disease specific items. No report appeared to be available as yet. | Generic and some disease specific items | Pilot study collection | England, UK |
| Department of Health/ NHS | https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/216651/dh_128447.pdf | Report | Proms in England: A Methodology for identifying potential outliers | 2011 | Describes the statistical methods to identify provider outliers using generic and disease specific PROMs data for benchmarking health outcomes as part of the PROMs programme in the UK. The PROMs programme collects data on elective surgery for hip and knee replacement, varicose vein surgery or groin hernia surgery. | Generic and disease specific - elective surgeries | National | England, UK |
| Department of Health/ NHS | https://www.networks.nhs.uk/nhs-networks/health-investment-network/documents/Using%20PROMT%20-%20v1.0%20-20110602.pdf | Webpages | Using the Patient Reported Outcome Measures Tool (PROMT) | 2011 | The purpose of this tool is to provide commissioners with easily understandable information and interpretation of PROMs data to assist their health investment decisions. It is the first such tool designed specifically for commissioners. | Tool for Commissioners to understand PROMs | NA - overview | England, UK |
| Department of Health/ NHS | https://www.gov.uk/government/publications/liberating-the-nhs-white-paper | White Paper | Equity and Excellence: Liberating the NHS | 2010 | This white paper aims to provide clarity of purpose for the NHS. It discusses the government’s strategy for a more responsive, patient-centred NHS, which achieves outcomes that are among the best in the world. As a part of this it briefly discusses the need to expand the validity, collection and use of PROMs across the NHS wherever practicable. | PROMs in general | NA - overview | England, UK |
| Department of Public Health, University of Oxford (Peters et al.) | http://www.qoru.ac.uk/wp-content/uploads/2013/11/PROMs-Pilot-Report-June-2013.pdf | Report | Pilot study of patient reported outcome measures (PROMs) in primary care | 2013 | Study found that it is possible to obtain responses to PROMs from individuals with long-term conditions via general practice clinical systems at rates that are very similar to those observed for the General Practice Patient Survey (GPPS). The logistics of doing so via remote access is not straightforward and further work would be necessary to make such a system feasible across all practices’ clinical systems. Even if PROMs could be made more relevant to patients and their healthcare providers, in long-term conditions PROMs scores cannot be as easily traced to inputs of services as can be achieved with elective surgical procedures. Instead it may be more realistic to see PROMs high-lighting or drawing attention to matters of concern to patients. Centre is part of QORU (quality and outcomes of person-centred care research unit) collaboration which has now developed a measure to assess PROMs for long term conditions. | Condition specific - long term conditions | Primary care data collection | England, UK |
| The Health Foundation (Allcock) | http://www.health.org.uk/blog/outcomes-based-commissioning-%E2%80%93-much-promise-it-something-ccgs-can-actually-deliver | Article | Outcomes-based Commissioning - much promise but is it something CCGs can actually deliver on | 2015 | Discusses the introduction of outcomes based commissioning in the UK and current challenges which include infrastructure, the development of the requisite skills set and effective change management strategies which need to be nurtured by the NHS. A full report is also available. | PROMs in general | NA | UK |
| Health and Social Care Information Centre | http://www.hscic.gov.uk/benefitscasestudies/proms | Briefing sheet and full report available | PROMS benefits case study: Patient Reported Outcome Measures (PROMs) outputs | 2015 | Provides a summary of the benefits derived from the NHS PROMs program - uses case studies to provide examples of improved practice. | PROMs case-studies | National elective surgery collection | UK |
| Health and Social Care Information Centre | http://www.hscic.gov.uk/media/1537/A-Guide-to-PROMs-Methodology/pdf/PROMs_Guide_V10.pdf | Report | Patient Reported Outcome Measures (PROMs) in England. A guide to PROMs methodology | 2015 | Explains the methods used to collect and report on the PROMs programme including case-mix adjustment and the data linkage with the Hospital Episodes Statistics data collection. Note the Patient Outcomes in Surgery Audit (POIS) was a fore-runner of the PROMs programme. | PROMs -elective surgery | National elective surgery collection | England, UK |
| Health and Social Care Information Centre | https://www.england.nhs.uk/wp-content/uploads/2013/07/hosp-data-consult.pdf | Consultation paper | NHS Hospital Data and Datasets: A consultation | 2014 | This document provides an open consultation on hospital data and datasets in the NHS. The NHS argues that in order to improve the quality, efficiency, and experience of care while reducing healthcare inequalities, it is imperative for additional information to be extracted from hospitals, so that it can be made available in appropriate formats to commissioners, providers, researchers, and patients. It summarises what data are currently collected by the NHS and suggests future hospital extracts. PROMs data are barely mentioned except to say that patients in the future should have access to detailed information on the performance of hospitals, clinics, wards and consultants to provide them with better information with which to make a more informed choice about where to receive their care. | PROMs in general | Hospital Episodes Statistics | England, UK |
| Health and Social Care Information Centre | http://www.hscic.gov.uk/catalogue/PUB20779 | Provisional Report | Provisional Monthly PROMs in England 2015-2016 | 2016 | This paper provides the results of PROMs relating to elective inpatient surgery for four common elective procedures (hip and knee replacement, varicose vein surgery and groin hernia surgery). Patients are asked to complete questionnaires before and after their operations to assess improvement in health as perceived by them. The results focus on data collected between April 2015 and January 2016. Increases in general health comparing pre- and post-operative EQ-5D Index and EQ-VAS are highlighted. It also demonstrated that for condition-specific questionnaires improvements in patients' conditions were recorded for: 96.9 per cent of hip replacement respondents, 93.8 per cent of knee replacement respondents and 82.8 per cent of varicose vein respondents. | Generic and disease specific | National -elective surgery | England, UK |
| Healthcare Quality Improvement Partnership | http://www.hqip.org.uk/national-programmes/ | Webpages | National Programmes | Accessed 2016 | This website provides an overview of the Healthcare Quality Improvement Partnership and its role in overseeing several national healthcare quality improvement programmes. The focus is on the National Clinical Audit and Patient Outcomes Programme (NCAPOP) and its two main sub-programmes: the National Clinical Audit Programme and the Clinical Outcome Review Programme. Both programmes are designed to support healthcare provider and commissioning organisations, clinicians and patients to work together to improve patient outcomes across a wide range of conditions. Its purpose is to engage healthcare professionals in the systematic evaluation of their clinical practice against standards and to support and encourage improvement in the quality of treatment and care. Some audits have included PROMs but individual tools are not discussed. | PROMs in audit | Audit collections | UK |
| Healthcare Quality Improvement Partnership (Keenan) | https://www.noca.ie/wp-content/uploads/2015/05/Danny-Keenan_HQIP-Audit-Ireland-Keenanv2.pdf | Presentation | Overview | Accessed 2016 | This presentation provides a summary of the National Clinical Audit Programme (NCAP) in the UK from the perspective of the Healthcare Quality Improvement Partnership. NCAP includes 30+ national audits covering: Acute; Cancer; Children and Women's Health; Heart; Long-term Conditions; Mental Health and Older People. It includes a focus on patient directed audit and the move towards the Consultants Outcome Programme with its focus on the transparency of performance data in the UK. The focus of this paper is on the logic of conducting clinical audits rather than focussing on individual PROMs tools, although PROMs tools are mentioned and considered in some audits and related studies. | PROMs in audit | Audit collections | UK |
| Healthcare Quality Improvement Partnership | http://www.hqip.org.uk/news-events/news/rcog-publish-the-first-annual-report-of-the-national-ophthalmology-database-audit/ | Article | National Ophthalmology Database Audit | 2016 | This article discusses preliminary pilot results of the National Ophthalmology Database Audit of Cataract Surgery which is designed to collect data as part of routine clinical practice with a view to establishing an audit that will show current national performance and be used to improve cataract care. The tools to rate both posterior capsule rupture (PCR) and visual acuity (VA) are carried out both pre and post operation and are surgeon rated and not patient rated although patient reported measures of visual function in relation to general function are available. | Condition specific -clinician rated | Clinical Registry collection | UK |
| Institute of Applied Research Birmingham University | http://www.birmingham.ac.uk/research/activity/applied-health/research/patient-reported-outcomes/index.aspx | Webpages | Patient Reported Outcomes Group | Accessed 2016 | A PROMs research group led by M Calvert, mainly focussed on inclusion of PROMs in clinical trials concerning effectiveness research and the use of PRO trial data to inform clinical care. Involved in CONSORT PRO extension which provided guidance for reporting PRO - trial results. Engaged in the COMET (Core Outcome Measures in Effectiveness Trials) and team members are also involved with ISOQOL activities. Plays an advisory role re PROMs to local health area. | PROs in general | Research collections | UK |
| International Consortium for Health Outcomes Measurement (Van Tuykom and Stoefs) | https://www.ichom.org/files/articles/ICHOM-Bedfordshire-Case-Study.pdf | Case study | How the NHS is Leveraging an ICHOM standard set for Value-based Purchasing | 2014 | The NHS Bedfordshire Clinical Commissioning Group (BCCG) is the public health care payer for Bedfordshire in England. In April 2014, BCCG launched a five-year contract for musculoskeletal care with Circle Partnership—a provider network—built on a capitation-based funding formula incorporating financial incentives for delivering improved patient and clinical outcomes. This case study describes the context in which this new contract was developed and how outcome indicators have been incorporated in the contract, as well as the expected benefits and high-level business case. ICHOM claims this is the first payment model in England that pays for the results that matters most to patients. | ICHOM Standard Set for Low Back Pain, EQ-5D | Regional collection | UK |
| King's College London (Saunders) | https://www.kcl.ac.uk/lsm/research/divisions/cicelysaunders/attachments/Studies-OACC-Brief-Introduction-Booklet.pdf | Booklet | Introducing the Outcome Assessment and Complexity Collaborative (OACC) Suite of Measures | 2014 | The Outcome Assessment and Complexity Collaborative (OACC) has collated a suite of fit-for-purpose tools designed to measure quality in palliative care service delivery. This booklet provides background information relating to the OACC suite of tools and provides more detailed information relating to the tools. The project builds upon other relevant national and regional outcome measurement initiatives including the Palliative Care Outcomes Collaboration (PCOC) in Australia. | Generic and condition specific | Research and benchmarking collections | UK |
| King's Fund (Keurentjes) | http://www.kingsfund.org.uk/sites/files/kf/media/J%20Christiann%20Keurentjes%20-%20Defining%20acceptable%20thresholds%20for%20PROMs%20in%20total%20hip%20and%20knee%20replacement.pdf | Presentation | Defining Acceptable Thresholds for PROMs in Total Hip and Knee Replacement | 2014 | This paper discusses the approaches that might be used to determine clinically important differences in PROMs outcomes for total hip and knee replacements. It is often possible to find a statistically significance difference in outcomes data, but that difference may not be clinically meaningful. The paper addresses an important measurement issue concerning the use of PROMs data in clinical effectiveness research. | Disease specific | NA | UK |
| Kings Fund (Kent and Kelly) | http://www.kingsfund.org.uk/sites/files/kf/media/Dr%20James%20Kent%20and%20Dr%20Tom%20Kelley%20-%20International%20Consortium%20for%20Health%20Outcomes%20Measurement.pdf | Presentation | International Consortium for Health Outcomes Measurement | 2014 | Presentation to the King's Fund by Kent and Kelley from ICHOM (UK Office) about the ICHOM initiatives in developing standard sets for health outcome measurement. The datasets include PROMs. The presentation also addresses the issue of selecting the most appropriate PROMs for the disease or the condition. It is proposed to use internationally agreed datasets for the potential benchmarking of health outcomes data internationally. | Generic, disease and condition specific | Research collections with the potential for international comparisons | UK/ International |
| Kings Fund (Anas El Turabi et al.) | http://www.kingsfund.org.uk/sites/files/kf/media/Anas%20El%20Turabi,%20Barry%20McCormick%20and%20Robert%20Anderson%20-%20Can%20PROMS%20help%20with%20efficient%20patient%20selection%20and%20commissioning.pdf | Presentation | Can PROMS help with efficient patient selection and commissioning | Accessed 2016 | Discusses EQ-5D data from the UK showing QALY changes before and after 4 elective surgeries to discuss methods that might identify patients who may not benefit as much as others from such interventions. These might potentially become methods to ration access to surgery for those patients where the benefits of surgery might be minor but the costs may be high. Discusses two methods. | Generic and disease specific | National - elective surgery | UK |
| The King's Fund (Devlin and Appleby). | https://www.kingsfund.org.uk/sites/files/kf/Getting-the-most-out-of-PROMs-Nancy-Devlin-John-Appleby-Kings-Fund-March-2010.pdf | Report | Getting the most out of PROMs: Putting health outcomes at the heart of NHS decision-making | 2010 | Describes the introduction of the routine use of PROMs in the NHS 2009 and discusses the economic context for this. Describes PROMs and applications of PROMs data with a focus on patient choice of hospitals and treatments, and outcome benchmarking for managing clinical quality and quality improvement. Provides a useful discussion of the BUPA Hospitals earlier experience with using PROMs in the UK. Provides examples of using the EQ-5D data for determining the cost utility of interventions. | Generic and disease specific | BUPA collection; National - elective surgery | UK |
| The King's Fund (Appleby) | http://chspr.sites.olt.ubc.ca/files/2015/08/2012SlidesAppleby.pdf | Presentation | Paying for outcomes: Patient Reported Outcome in the English NHS | 2012 | Presentation by Prof Appleby to CHSPR Vancouver. Some interesting slides re costs by QALY gained (EQ-5D) using the example of hip replacement in the UK PROMs programme. | Generic | National elective surgery collection | England, UK |
| The King's Fund (Valderas) | http://www.kingsfund.org.uk/sites/files/kf/jose-valderas-future-use-patient-reported-outcome-measures-individual-patients-kingsfund-nov12.pdf | Presentation | Future Use of Patient Reported Outcome Measures (PROMs): Use for Individual Patients | 2016 | A presentation by Jose M Valderas providing an overview of the evidence supporting PROMs data and the pros and cons of using PROMs. It specifically showcases PROMS for Depression in Primary Care (the PHQ-9, HADS and BDI-II). The author argues that implementation is the key to the success of PROMs and highlights the need for specific PROMs training for health professional to improve validity, reliability and interpretation, the need for frequent and timely feedback and linking information to a specific action. Future research should focus on testing the clinical applications of different tools, identifying the best methods of data collection and improving interpretation and feedback to individuals. | PROMs in general | NA -overview | UK |
| The King's Fund (Browne) | http://www.kingsfund.org.uk/sites/files/kf/media/Professor%20John%20Browne%20-%20Individualised%20Patient%20Outcomes.pdf | Presentation | Individualised Patient Outcomes | Accessed 2016 | A presentation by Professor John Browne from Ireland providing an overview and critique of iPROMs. It introduces several tools and then provides evidence that critiques the validity and relevance of them. The tools referred to include the SEIQoL, the PGI and the Asthma Quality of Life Questionnaire. The author argues that more evidence is required to support the continued use of iPROMs. | Generic and Individual PROMs | NA - review | UK |
| The King's Fund (Gutaker et al.) | http://www.kingsfund.org.uk/sites/files/kf/media/Nils%20Gutacker%20-%20PROMs%20and%20hospital%20choice.pdf | Presentation | PROMs and hospital choice | Accessed 2016 | A presentation on how PROMs data can be used by patients to evaluate the relative clinical quality of providers of elective procedures. Results have limited significance however the author suggests that the impact of PROM data should be increased by publicising provider PROM scores more widely, ensuring PROM scores are presented in a way that is meaningful to patients and ensuring GPs know their local providers’ PROM scores. | PROMs for patient choice | NA - review | UK |
| Kings Fund (Devlin) | http://www.kingsfund.org.uk/sites/files/kf/media/Prof%20Nancy%20Devlin%20-%20What%20is%20the%20role%20of%20the%20EQ-VAS.pdf | Presentation | What is the role of the EQ-VAS? | 2014 | Discusses issues associated with the EQ-5D Visual Analog Scale as a measure of outcome as compared with using EQ-5D index scores as a measure of change associated with an intervention. Notes the EQ-VAS is measuring something quite different to the overall EQ-5D profile It may have a potentially valuable and complementary role but it requires improvements and consistency in formatting. | Generic | National - elective surgery | UK |
| The King's Fund (Campbell) | http://www.kingsfund.org.uk/sites/files/kf/media/Professor%20John%20Campbell%20-%20Use%20of%20PROMs%20in%20the%20general%20population.pdf | Presentation | Use of PROMs in the general population: Health related quality of life and multimorbidity: evidence from English GP Patient survey | Accessed 2016 | This is a population health survey application (General Practice Patient Survey) which included the EQ-5D and a self-reported morbidity questionnaire to examine the effects of morbidity and multi-morbidity on HRQOL. Over 1 million GP patients responded - 38% of the target group. Found that a comorbid mental health problem had a greater adverse association with HRQOL than any single comorbid physical condition (other than neurological problems). | Generic | National GP survey | UK |
| The King's Fund | http://www.kingsfund.org.uk/events/patient-reported-outcome-measures-proms-research-conference | webpages -programme and presentations | Patient reported outcome measures (PROMs) research conference | 2012 | Conference convened by the King's Fund and the LSH&TM. An interesting set of slide presentations which reflect on some of the methodological issues related to the UK PROMs program for elective surgery (e.g. casemix, issues associated with the EQ-5D utility measure, potential areas of bias etc.). | Generic and disease specific | Relates to National data | UK |
| The King's Fund (Alonso) | http://www.kingsfund.org.uk/sites/files/kf/media/Jordi%20Alonso%20-%20The%20care%20for%20an%20international%20PROMIS%20initiative.pdf | Presentation | PROMIS® Patient Reported Outcomes Measurement Information System: The Case for an International PROMIS initiative | 2014 | Presentation by J Alonso to the King's Fund concerning the PROMIS initiative in the US and which discusses the potential for an international initiative using these PROMs measures. | Generic, disease and condition specific measures | Research collections | UK/US |
| London School of Hygiene and Tropical Medicine (Smith et. al. ) | https://www.lshtm.ac.uk/php/departmentofhealthservicesresearchandpolicy/assets/promsnickblack2005.pdf | Report | Patient-Reported Outcome Measures (PROMs) for routine use in Treatment Centres: recommendations based on a review of the scientific evidence | 2005 | Earlier paper by Smith et al. which provides the background to the selection of generic and disease specific measures for the PROMs programme (elective surgery) in the UK. EQ-5D recommended for the generic measure, VF-14 for cataract surgery, Aberdeen Varicose Vein Questionnaire for varicose vein surgery, Oxford Hip and Knee scales for joint replacement surgery and the SF-36 (a generic measure) for hernia repair. Most of these were adopted by the PROMs programme. | Generic and disease specific measures | NA - Overview | UK |
| London School of Hygiene and Tropical Medicine (Black) | researchonline.lshtm.ac.uk/612296/1/bmj.f167.full.pdf | Paper and journal article | Patient reported outcomes could transform the NHS | 2013 | A useful overview of the PROMs programme for 4 areas of elective surgery in the UK and identifies current issues concerning implementation and interpretation and use of data. See Academic Literature summary. | Generic and disease specific measures | National -elective surgery data collections | UK |
| London School of Hygiene and Tropical Medicine (Black) | http://www.kingsfund.org.uk/sites/files/kf/nick-black-progress-national-proms-programme-kingsfund-nov12_0.pdf | Presentation | Setting the scene: progress with the National PROMs Programme | 2012 | Keynote presentation at King's Fund 2012 PROMs conference. Notes some additional pilots in the UK PROMs programme - coronary revascularization, long term conditions, cancer survivors. Discusses the results of the elective surgery PROMs program and raises important issues relating to recruitment bias and response bias with regard to comparing providers. Also considers the type of feedback information preferred by patients and clinicians. | Generic and disease specific measures | National - elective surgery | UK |
| Medical Research Council | https://www.mrc.ac.uk/documents/pdf/patient-reported-outcome-measures-proms-identifying-uk-research-priorities1/ | Workshop proceedings | Patient-reported outcome measures (PROMs): identifying UK research priorities | 2009 | This meeting was held just prior to the introduction of the PROMs programme for elective surgeries in the UK. It identified the need for research to strengthen the underpinning evidence for the core content of PROMs, reassessing the relevance of the EQ-5D utility measure, addressing gaps where PROMs were not currently available (end of life, childhood issues) developing guidelines for the use of PROMs in effectiveness research, demonstrating the utility of PROMs in clinical research and decision making. Although progress has been made in some areas many of these research issues are still as pertinent today. | Generic and disease specific measures | NA | UK |
| Mental Health Network NHS Confederation | http://www.londonprogrammes.nhs.uk/wp-content/uploads/2012/04/MHN-Mental-Health-Outcomes-Report.pdf | Report | No Health Without Mental Health: Developing an Outcomes Based Approach | 2011 | This report by the Mental Health Network in the UK provides background and recommendations to the NHS about developing an outcomes-based approach in mental health. In line with their approach to Patient Recorded Outcome Measures (PROMS) for physical healthcare, the Department of Health are looking to develop a PROM for mental health using a diagnosis specific approach. Depression has been selected as the first target area and collaborative work has started with two providers to look at two or three instruments for use in secondary care. These are PHQ-9, EQ-5D and CORE 10 and it is hoped that pilot work will commence later this financial year to assess feasibility and acceptability to both users and clinicians. The report briefly mentions the community mental health survey and the Adult Carer’s Quality of Life tool that looks at the experiences of people using mental health services. | Generic, disease and condition specific | NA | UK |
| National Health Service England | https://www.engage.england.nhs.uk/consultation/proms-programme | Consultation paper | National PROMs programme consultation | 2016 | This report by the Mental Health Network in the UK provides background and recommendations to the NHS about developing an outcomes-based approach in mental health. In line with their approach to Patient Recorded Outcome Measures (PROMS) for physical healthcare, the Department of Health are looking to develop a PROM for mental health using a diagnosis specific approach. Depression has been selected as the first target area and collaborative work has started with two providers to look at two or three instruments for use in secondary care. These are the PHQ-9, EQ-5D and CORE 10. The report briefly mentions the community mental health survey and the Adult Carer’s Quality of Life tool that looks at the experiences of people using mental health services. | PROMs in general | National - elective surgery | England, UK |
| National Health Service England | https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/417894/At_a_glance_acc.pdf | Outline of framework | NHS Outcomes Framework 2015-2016 | 2015 | As a part of the NHS outcomes Framework for 2015/16 this ‘at a glance’ guide provides a 5 overarching goals for the NHS - preventing people from dying, enhancing QOL, recovery, positive experience of care and safety. A list of indicators and tools (e.g. PROMs) used by the NHS to measure outcomes are mapped to these five goals. | PROMs in general | National data collections | England, UK |
| National Health Service England - Patient Experience Portal | http://patientexperienceportal.org/article/patient-reported-outcome-measures-their-role-in-measuring-and-improving-patient-experience | Webpages | Patient Reported Outcome Measures: Their Role in Measuring and Improving Patient Experience | 2012 | This paper provides a summary of PROMs and their role in measuring and improving the patient experience. Published in 2012 it provides examples of PROMs and their current applications; how to link patient reported outcomes and patient experience; combining PROMs and PREMs in a single measure and how to use PROMs when commissioning services. It discusses the (EQ-5D), the Oxford Hip Score, the Oxford Knees Score and the Stroke Impact Scale. | PROMs in general | NA-Overview | England, UK |
| NICE - National Institute for Health and Care Excellence | https://www.nice.org.uk/standards-and-indicators | Webpages | NICE - standards and indicators | Accessed 2016 | NICE role has a focus on providing evidence based guidance (guidelines) and advice, the evaluation of new technologies, developing quality standards and performance metrics for those providing and commissioning health services in the NHS and identifying research gaps. In the context of these various activities the consideration of PROMs are relevant (particularly around the evaluation of technology, standards). In the standards section a search on PROMs identified over 750 entries and many of these were recommendations to include PROMs assessment for the medical specialty concerned. NICE also provides information support through the provision of search engines | PROMs in general | Literature database | UK |
| National Joint Registry | http://www.njrcentre.org.uk/njrcentre/Portals/0/Documents/England/Leaflets/NJR%20Improving%20joint%20replacement%20-%20March%202015%20Online.pdf | Webpages | Improving joint replacement | 2015 | The National Joint Registry (NJR) PROMs involves 50,000 hip and knee patients who are contacted at one, three and five years after their operation to ask for their views about the surgery and its success and to help build a broader picture of success in joint replacement. The NHS also asks patients about their health and quality of life before they have an operation, and about their health and the effectiveness of the operation afterwards at six months. | Generic and disease specific | National -elective surgery hip and knee data collections | UK |
| National Joint Registry | http://www.njrcentre.org.uk/njrcentre/NewsandEvents/NJRrespondstoNHSEngland%E2%80%99sPROMsconsultation/tabid/407/Default.aspx | Consultation response | NHS England's national PROMs programme consultation: Response from the British Orthopaedic Association (BOA), British Hip Society (BHS), British Association for Surgery of the Knee (BASK), British Elbow and Shoulder Society (BESS), British Orthopaedic Foot and Ankle Society (BOFAS) and the National Joint Registry for England, Wales, Northern Ireland and the Isle of Man (NJR) | 2016 | This joint response from the NJR and key orthopaedic groups strongly endorses the PROMs programme and it highlights the enormous value that PROMs provides in both comparative data to support quality improvement and for research purposes regarding outcomes. | Generic and disease specific | National - elective surgery hip and knee data collections | UK |
| The Neurological Alliance | http://www.neural.org.uk/store/assets/files/275/original/Intelligent-Outcomes-Neurological-Alliance-MHP-Health-Mandate-report.pdf | Position paper | Intelligent outcomes: Applying the health and social care reforms to improve outcomes for people with neurological conditions | 2012 | The Neurological Alliance (NA) argue that the basis for Indicator 2 on the EQ-5D is problematic, as it fails to take into account some of the debilitating symptoms of neurological conditions, such as fatigue. This measure will therefore only go some way in helping to understand whether quality of life for people with neurological conditions is improving. The NA recommends that the Department should develop neurology-specific PROMs to reach beyond EQ-5D in measuring quality of life. | Generic, disease and condition specific | NA | UK |
| Nuffield Department of Population Health, University of Oxford - Health Services Research Unit | https://www.ndph.ox.ac.uk/research/health-services-research-unit-hsru | Webpages | About Health Services Research Unit | Accessed 2016 | The HSRU, led by Prof Jenkinson, has a team of internationally recognised researchers involved in PROMs, PREMs and clinical effectiveness research. Key researchers include Prof Fitzpatrick, Elizabeth Gibbons, Jill Dawson and Angela Coulter. The unit plays an important role in the testing and development of health outcomes measures which enables rigorous evaluations of health service interventions. The unit contributes to NHS and Dept. of Health outcomes related research committees. | Generic and disease specific PROMs, PREMs | Research collections | UK |
| Office of Health Economics | https://www.ohe.org/news/ohe-response-national-proms-programme-consultation | Webpages and consultation response | About OHE and project pages re Devlin et al., and Feng et al. | Accessed 2016 | The aim of the Centre is to support better health care policies by providing economic and statistical analyses of critical issues. Professor Devlin, Director of Research, has been heavily involved with the analysis of the EQ--5D and EQ-5D-VAS data from the PROMs program (Devlin et al., 2016, Feng et al., 2016). The EQ-5D is a generic index, which in association with costs data, can be used to evaluate the cost-utility of health interventions. Prof Devlin and Prof Appleby (from The King's Fund) have collaborated on papers related to the PROMs initiative. Note the response to the NHS current consultation process on the PROMs initiative. A major point raised was that PROMs data are vital to understanding the effectiveness and cost effectiveness of NHS services. For this reason, they strongly urged NHS England to continue to field both a brief, generic PRO questionnaire in combination with a detailed, condition-specific measure, where available. Generic PRO data provide the crucial, common denominator with which to measure outcomes across treatments and diseases. | Generic and disease specific | National - elective surgery and other research collections | UK |
| Outcomes Based Healthcare | http://outcomesbasedhealthcare.com/OBH_Outcomes_Myths_2014.pdf | Webpages | Outcomes Myths | 2014 | Outcomes Based Healthcare (OBH) appears to be a commercial group that work with people, local communities and the healthcare system as a whole to define outcomes, whilst providing academic and technical rigour to the process of measuring and contracting for outcomes. This paper provides an introduction to outcomes and provides a very brief overview of PROMs. They introduce the concept of Patient Defined Outcome Measures (PDOMs). | PROMs in general | NA | UK |
| Queens University Belfast (Downing et al.) | http://pure.qub.ac.uk/portal/files/17050306/NCIN_2015_Poster_P_115_LAPCD_Amy_Downing.pdf | Poster | A national prostate cancer patient reported outcome measure (PROM) programme | 2015 | Study aimed to describe and explore HRQL of men with and without prostate cancer to inform health care policy and service delivery. PROM battery was developed using EQ-5D, EPIC-26 and the Social Difficulties Inventory, plus patient perspectives measures (the Decision Regret Scale and Patient Empowerment Scale). Really a PROM application re burden of disease for men with prostate cancer. | Generic and disease specific - prostate cancer (EPIC -26) | Qualitative and quantitative data collection. | UK and Ireland |
| Quality and Outcomes of Patient-Centred Care Research Unit (Peters et al.) | http://www.healthcareconferencesuk.co.uk/userfiles/Michele_Peters.pdf | Presentation | The long-term conditions questionnaire (LTCQ): a patient-reported outcome measure | 2015 | QORU is a collaboration between the Universities of Kent, Oxford and the London School of Economics and Political Science (LSE). Following the NHS pilot project on long term conditions a new measure for LTCs was recommended and developed. | Condition specific - long term conditions | Research collection | UK |
| Royal College of Obstetrics and Gynaecology | https://www.rcog.org.uk/globalassets/documents/guidelines/scientific-impact-papers/sip_31.pdf | Report | Patient-reported Outcome Measures in Gynaecology. Scientific Impact Paper 31 | 2012 | Paper by Sherwin and Wood on behalf of ROCOG which provides an overview of the PROMs initiative in the UK. It recommends wider adoption of the collection of PROM data and suggests it becomes embedded in routine clinical practice to help inform improvements in care. They note some limitations of PROM data and indicate that substantial infrastructure development would be required for successful implementation. | Generic and disease specific | NA | UK |
| Royal College of Psychiatrists (Killaspy) | http://www.rcpsych.ac.uk/pdf/4%20Killaspy%20S29%20IC2013.pdf | Presentation | Clinical outcomes in mental health rehabilitation services | 2013 | Presentation is about outcome measures in mental health. Notes the Warwick & Edinburgh Mental Health Well Being Scale (7 item) being used as a mental health PROM. Also note that the HoNOS, a clinical rating scale is also used in their data collections. | Condition specific - mental health | Research - national | UK |
| Royal Statistical Society | https://www.statslife.org.uk/members-area/member-news/sections-and-local-group-meeting-reports/1044-primary-health-care-study-group-meeting-patient-reported-outcome-measures | Seminar | Primary Health Care study group meeting: Patient reported outcome measures | 2013 | A half day workshop was run by the Primary Health Care Study Group in April 2013 on Patient Reported Outcome Measures (PROMs). The workshop included three keynote speakers; the first discussed the cost effectiveness of different technologies for total hip replacement: cemented, cementless and a hybrid of the two; the second discussed the development of a generic M-PROM for the measurement of health status for a wide range of musculoskeletal disorders and the final talk provided an assessment of PROMs including an evaluation of the validity, reliability, responsiveness and administrative burden. | PROMs in general | NA | UK |
| Southern Health NHS (Vernon-Wilson et al.) | http://www.southernhealth.nhs.uk/EasySiteWeb/GatewayLink.aspx?alId=86696 | Report | Patient Reported Outcome Measures PROMS Workshop Development 2013/14 | 2014 | This is a briefing paper for a workshop focussing on PROMs. It discusses the history of PROMs and introduces the development of the Hope, Agency and Opportunity questionnaire as a means of asking service users for their views on things that are important to their recovery. The workshop seeks feedback from participants through a variety of role play activities. | PROMs in general | NA | UK |
| UK Clinical trials Gateway | https://ukctg.nihr.ac.uk/trials/trial-details/trial-details?trialNumber=ISRCTN13511717 | webpage | Development and evaluation of a patient-reported instrument to monitor oncological and functional outcomes after radical prostatectomy: the True NTH Post Surgery programme | Accessed 2016 | This web page focusses on the development and evaluation of the True NTH UK Post Surgical Follow up Programme focussing on using PROMs to assess the extent and timeline for recovery of urinary and sexual function after radical surgery for prostate cancer. It is hoped that a new instrument can be developed for radical prostatectomy that can be used with men in the UK to monitor their recovery in the first 12 months after surgery. It is envisaged that the PROMs data will be used in clinical practice to monitor progress in outcomes for individual patients. The programme will also allow a comparison of results of surgeons and hospitals against appropriate benchmarks for urinary and sexual outcomes after radical prostatectomy. The web-page provides background information to help men decide whether this trial is of interest. | Generic, disease and condition specific | Proposed research collection | UK |
| University of Sheffield (Health Economics & Decision Science) | https://www.shef.ac.uk/polopoly_fs/1.469895!/file/HEDSNEWS10.1summer2015.pdf | Newsletter | ReQOL | 2016 | This newsletter refers to the development of a measure describing the quality of life and recovery in mental health populations (ReQOL) which may be used across a wide range of non-psychotic and psychotic conditions. The measure consists of seven themes that have been identified from a systematic review and interviews with service users. Sixty one questions are being presented to over 1000 service users across the voluntary, primary, secondary and tertiary care settings. Psychometric analysis will be undertaken to produce the long version (20-30 items) and the short version (about 10 items) of the ReQoL measures. | Condition specific - mental health | NA | UK |
| University of Sheffield (Health Economics & Decision Science) | https://www.shef.ac.uk/scharr/sections/heds/promsconference2016 | Conference | PROMs conference | 2016 | This website provides a brief overview of the UK's first national researcher-led event to focus on methodologies around development, testing and use of PROMS in different contexts and settings. Taking place on 9 June 2016, the conference brought together leading researchers to discuss cutting edge developments in PROMs research. There were three plenary sessions on ‘Realist synthesis’, using ‘Computer Adaptive Testing’ and ‘Wellbeing’. The event was chaired by Professor Ray Fitzpatrick and was hosted by Professor John Brazier, Elizabeth Gibbons, Professor Jose M Valderas and Dr Georgina Jones. | PROMs -all types | NA | UK |
| University of Sheffield, School of Health & Related Research (Keetharuth et al.) | http://www.eepru.org.uk/FINAL%20Report%20WP2.pdf | Research Report | Supporting the routine collection of patient reported outcome measures (PROMs) for the National Clinical Audit Work Package 2. How should PROMS data be collected? |
2015 | This research report summarises current practice for the administration and application of electronic patient reported outcome measures (e-PROMs) in health care settings to inform the use of these measures in the National Clinical Audit (NCA). It focusses in on the evidence for the use of electronic methods for the administration of PROMS, the potential benefits, uses and applications of e-PROMs and the challenges in implementation and collection of e-PROMs. It makes six recommendations for the implementation of e-PROMs including: using multiple data collection modes, having multiple places for completion, embedding e-PROMs in clinical practice, using data in clinical decision making, encouraging collaboration between academics, IT professionals and clinicians and choosing PROMs based on the evidence. | e-PROMs | National Clinical Audit Program | UK |
| University College London (Tadic et al.) | https://www.ucl.ac.uk/childproms/docs/PROM_PREM_FocusGroup_report_Oct2012.pdf | Report | Patient Reported Outcome and Experience Measures (PROMs and PREMs): Service Users’ Perspectives | 2012 | This report provides background information to address the current strategies and challenges concerning the development and application of PROMs and PREMs for children and young people. It highlights the results of two focus groups held with patients and parents to determine their experiences of using PROMs and PREMs. Results highlight the need for adequate information provision to allow patients to understand the purpose of PROMs and PREMs; the importance of receiving feedback following their completion in terms of how this information contributes to their child’s individual care; patient and parent preferences for the completion of questionnaires in routine clinical practice; and issues, such as confidentiality and differences in perspective, related to obtaining parental and child patient report. | PROMs and PREMs | NA | UK |
| Yorkshire and Humber Quality Observatory (Wood) | www.yhpho.org.uk/resource/view.aspx?RID=127260 | Presentation | Patient Reported Outcome Measures | 2011 | Discusses the role of regional Quality Observatories -10 set up across England - which facilitate the analysis and benchmarking of regional PROMs data amongst other QI initiatives. This presentation provides an overview of PROMs covering four procedures: groin hernia repair, unilateral hip replacements, unilateral knee replacements and varicose vein surgery. It also discusses the use of the EQ-5D and how to interpret results from the tool. It explores potential limitations of PROMs data including: small sample sizes, voluntary completion of tools and time lags in data. Potential ways to improve PROMs data are also explored with a focus on the ability of patients to provide consent for their personal details to be used in the analysis. | Generic and disease specific | National elective surgery collection | UK |
| Ireland | ||||||||
| Cork Open Research Archive (Boyce) | https://cora.ucc.ie/bitstream/handle/10468/2038/Maria%20Boyce-%20PROMs%20thesis%2c%202014.pdf?sequence=2&isAllowed=y | Thesis | The effectiveness of using patient-reported outcome measures as quality improvement tools | 2014 | This is a PHD thesis entitled ‘The effectiveness of using patient-reported outcome measures as quality improvement tools’. This research demonstrated that peer benchmarked PROMs feedback had minimal impact on the behaviour of surgeons. The qualitative study identified the reasons for the observed reluctance of providers to embrace PROMs as conceptual, methodological and practical factors. Methods to address potential barriers to change include consulting with professionals at the developmental stage of a feedback initiative, communicating with professionals about the objectives of the data collection, educating professionals on the properties and interpretation of the data, and supporting professionals in using the information to identify areas for improvement. | Generic and disease specific | Research collection | Ireland |
| Health Service Executive | http://www.hse.ie/eng/services/news/newsfeatures/masterclass/Towards_Value_Based_healthcare_in_Ireland_an_analysis_of_health_outcomes_in_Porstate_Cancer.pdf | Collection of presentations | Towards value based healthcare in Ireland: An analysis of health outcomes in prostate cancer | Accessed 2016 | A collection of seminar presentations (Dooley, Sullivan, Murray) around the theme of 'value based' healthcare and the collection of PROMs data (and other clinical and health outcome related performance indicators) for both surgery and radiation treatments in Ireland. | Generic and disease specific | Registry and research collections | Ireland |
| Irish National Orthopaedic Register and Irish Institute of Trauma and Orthopaedic Surgery | https://www.hiqa.ie/healthcare/health-information/data-collections/online-catalogue/irish-national-orthopaedic-register- | Webpages | Irish National Orthopaedic Register | Accessed 2016 | This registry commenced in 2014, it includes all elective orthopaedic centres and independent hospitals in Ireland. It was set up by the National Office of Clinical Audit (NOCA) and is supported clinically by the Irish Institute of Trauma and Orthopaedic Surgery (IITOS). Data captured includes pre-operative assessment (comorbidities, BMI etc.), peri operative clinical data, post-operative assessment (complications, incidents), PROMs, patient demographic and GP details. Used by Boyce and Brown (2015) in the PROFILE study. | Generic and disease specific | Registry collection | Ireland |
| Irish Prostate Cancer Outcomes Registry (Murphy et al.) | http://www.ipcor.ie/docs/Article%20in%20Cancer%20Professional.pdf | Article | Bridging the data gap | 2016 | This paper discusses the IPCOR study that includes prostate cancer PROMs used at diagnosis and throughout treatment. The study commenced in Spring 2016 and incorporates the Expanded Prostate Cancer Index Composite (EPIC-26). It also uses the EORTC QLQ-C30 and EQ-5D-5L to assess general health-related quality of life. PROMs data are collected using postal questionnaires and a web-based data collection system. Information contained within the IPCOR registry will routinely be used by IPCOR personnel to assess quality of care provided to men with prostate cancer and foster research leading to improvements in care and survival. | Generic and disease specific | National Registry collection | Ireland |
| Irish Prostate Cancer Outcomes Research (IPCOR) | http://www.ipcor.ie/docs/IPCOR%20First%20Annual%20Report%20-%20April%202015.pdf | Report | Irish Prostate Cancer Outcomes Research (IPCOR) Annual Report 2015 | 2015 | This is the 2015 Annual Report from IPCOR (see above). The IPCOR PROMs data collection uses a dataset recommended by the International Consortium for Health Outcomes Measurement (ICHOM) Prostate Cancer Working Group to allow for international benchmarking. PROMs are measured between diagnosis and treatment (baseline) and on an annual basis thereafter thus providing information on these outcomes across the entire patient journey. The questionnaires measure key PROMs including physical wellbeing (e.g. functional status) and health-related quality-of-life and utility in order to document their experiences and facilitate future evaluation of the cost-effectiveness of therapies. This is a brand new study and data are not yet available for analysis. | Generic and disease specific | National Registry collection | Ireland |
| Royal College of Surgeons Ireland (Campbell) | http://epubs.rcsi.ie/cgi/viewcontent.cgi?article=1087&context=mscttheses | Thesis | Change Project Dissertation: Introduction of Patient Reported Outcomes Measures on a Multi Disciplinary Team Outpatient Clinic | 2015 | This is a Masters thesis investigating Patient Reported Outcome Measures on a Multi-Disciplinary Team Outpatient Clinic. It provides interdisciplinary assessment; diagnosis, treatment planning and follow-up care for patients undergoing orthognathic (orthodontic) treatment. The tool assesses the impact of this treatment on patients’ quality of life and includes patient experience. Results from the first three months of PROMs introduction indicated a high completion rate for the questionnaires and compliance with database completion. There was a statistically significant difference between pre and post treatment quality of life scores for orthognathic patients (P<0.05). The thesis claims that the PROMs data collected is extremely valuable both to inform commissioning groups of treatment benefits and justify service funding, while also providing patient experience data as a quality improvement metric. | Generic and disease specific | National Orthognathic Outcome Database | Ireland/UK |
| Royal College of Surgeons Ireland (Doyle) | http://www.rcsi.ie/cat_course_detail.jsp?n=2327&p=107&itemID=379 | Webpage - training opportunities | Psychometrics of Patient Reported Outcomes | Accessed 2016 | Patient reported outcomes are a vital part of modern healthcare. However, commonly used measures do not always demonstrate sound psychometric qualities, and could be enhanced by omitting non-performing items. In other cases, the measures should be abandoned and other, more suitable ones adopted. This project will use large databases to assess the psychometrics of such scales, using modern methods such as item response theory and confirmatory factor analysis. | PROMs in general | Research databases | Ireland |
| University College Cork, Health Services Research | https://www.ucc.ie/en/epid/research/healthservicesresearch/ | Webpage | Patient Reported Outcomes: Profile Trial | Accessed 2016 | This paper discusses the Patient-Reported Outcomes: Feedback Interpretation and Learning Experiment (PROFILE) Trial. This research evaluated the effectiveness of using PROMs as a performance measure and involved a mixed-methods approach including a cluster randomised controlled trial and semi-structured interviews with surgeons. The trial tested whether providing benchmarked PROMs feedback to surgeons improves outcomes for patients undergoing hip replacement surgery. This involved collecting data from up to 1,500 hip replacement patients across 16 hospitals in Ireland (Oxford Hip Score, EQ-5D). It is believed that this was the first study to evaluate the use of PROMs as a measure of professional performance. Boyce and Brown (2015) reported outcomes for patients operated on by surgeons who had received peer benchmarked PROMs data were not statistically different from the outcomes of patients operated on by surgeons who did not receive feedback but was it realistic to expect this? An early QI application of PROMs data where further consideration is required re the appropriate outcomes measures for such QI applications of PROMs - see report. | Generic and disease specific | Research collection | Ireland |
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