Strategic development of patient and public involvement in a major comparative effectiveness research programme in the UK
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Strategic development of patient and public involvement in a major comparative effectiveness research programme in the UK
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Strategic development of patient and public involvement in a major comparative effectiveness research programme in the UK
- 1. Strategic development of patient and public involvement in a major comparative effectiveness research programme in the UK NIHR Evaluation, Trials and Studies Coordinating Centre Alison Ford, Ruairidh Milne, Elaine Williams 26 June 2012
- 3. Health Technology Assessment Programme • Established 1993, central government funded • Managed by NIHR Evaluation Trials & Studies Coordinating Centre • Commissions and manages health research • Primary research and evidence synthesis • Value for money
- 4. Health Technology Assessment Programme Findings published in HTA journal 2010 Impact Factor 4.197: in the top 10% of medical and health-related journals
- 5. “People-focused research in the NHS simply cannot be delivered without the involvement of patients and the public. No matter how complicated the research or how brilliant the researcher, patients and the public always offer unique, invaluable insight.” Professor Dame Sally C Davies Chief Medical Officer for England, Department of Health
- 6. PPI established within HTA • HTA website for topic identification ideas • Referees for commissioning briefs • Panel members at prioritisation stage • Referees for full proposals But......‘an uneven spread’ Moran R, Davidson P. An uneven spread: a review of public involvement in the National Institute of Health Research's Health Technology Assessment program. International Journal of Technology Assessment in Health Care, 2011;27:343-7.
- 7. Rapid growth of NETSCC from 2008 • New programmes, different types of research • Broader portfolio • More identification, prioritisation and funding decisions • More applicants and studies to monitor • More outputs to publish and disseminate • New opportunities for involvement • More consistent and strategic approach needed
- 8. Developing the PPI strategic approach • Formal project structure • Brief literature review • Workshops with PPI lead staff • Consultation with public contributors • One-to-one consultation with programme directors • Consultation with & support from INVOLVE • Agreement secured with NETSCC Board
- 9. The PPI framework • What NETS programmes must do • What researchers should do • What public contributors can do • Across whole research cycle • Effective PPI activity • Internal research management • Design and conduct in studies
- 19. What have we gained? (1) How involvement has changed • Larger, more diverse range of people involved • More information recorded about individual public contributors’ experience, understanding & interest • Very high rate of public reviewer input to commissioning briefs and proposals • Public members on boards and panels of all programmes • Research applications show commitment to involvement of patients and the public in design and conduct of studies • Public involvement more actively monitored in progress of studies
- 20. What have we gained? (2) How NETSCC has changed • A real commitment to PPI • PPI woven into language of the organisation • Staff knowledge, skills & behaviour • Clear policy and support processes • Boards and panels see public contribution differently • A team approach to strategic development of PPI
- 21. Key learning for other organisations • It is possible to involve patients and the public in every aspect of research management • Genuine Board-level commitment is essential • Build components of the involvement approach into the organisation’s strategy • Networking across the health research community will bring about valuable contacts and economy of scale • Involved volunteers are not ‘free’ • Cultural change takes time
- 22. Any questions…? Alison Ford Public and Patient Involvement Manager t: +44 (0) 23 8059 7435 f: +44 (0) 23 8080 5639 e: A.R.Ford@southampton.ac.uk NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC) part of the National Institute of Health Research (NIHR) Alpha House, University of Southampton Science Park, Southampton SO16 7NS w: www.netscc.ac.uk Acknowledgement: This activity was funded by the NIHR and carried out by the Evaluation, Trials and Studies Coordinating Centre at the University of Southampton.
Notas do Editor
- HTA is at the heart of NETSCC Does not directly undertake research Balanced portfolio of research Average size of award £ 1.4 million for primary research, £250k for evidence synthesis Average duration 28 months (overall) Needs led, science added The HTA programme produces independent research about the effectiveness of different healthcare treatments and tests for those who use, manage and provide care in the NHS. It identifies the most important questions that the NHS needs the answers to by consulting widely with these groups, and commissions the research it thinks is most important through different funding routes .
- The impact factor adds to the significance of the HTA programme Lead in to next slide…. But why is involvement so important?
- This taken from the foreword to ‘Exploring Impact: public involvement in NHS, public health and social care research’ published by INVOLVE October 2009 Explain significance of INVOLVE in developing PPI in health research Why is involvement so important? She also says Their advice when designing implementing and evaluating research invariable makes studies more effective, more credible and often more cost effective
- We had a partially developed system of public involvement in the HTA programme. Objectives : This study comprises a review of public involvement strategies across the five stages of research management in the UK’s HTA program at the end of a 10-year period. These five stages are: identification of topics; prioritization of these topics as researchable questions; commissioning of research; monitoring of projects throughout their implementation; and publication and dissemination of findings. Methods : Internal HTA documentation was analysed alongside narrative analysis of semi-structured interviews of program staff, and a rapid review of published literature. Results : Public involvement strategies have developed with the growth of the HTA program but were spread unevenly across the five stages of research management. Public involvement was present in identification, strongest in prioritization, present in commissioning but minimal in monitoring and absent in publication and dissemination. Conclusions : The HTA program has developed public involvement strategies but mainly in prioritization. Further research is required to ascertain where public involvement can be most appropriately used and to evaluate its impact. We did not have high enough expectations of PPI in conduct of studies Peter Davidson – director of HTA is at the conference so can tell you more
- New studies = Science driven (EME) NHS service delivery (SDO then HS&DR) Patient experience (HSR then HS&DR) Public health outside NHS (PHR)
- Explain what INVOLVE is and how important it is to have the support & steer of this lead organisation for PPI in health research.
- Highlight the fact that the quality standards framework is built around our research cycle stages
- Highlight A.1.2 then D.2.1 then B.3.3 to examine some of the detail of the framework Come & talk to us about the framework at the NIHR stand Copies available at the stand
- Taking PPI into identification by reaching out to interested patients and members of the public and ensuring that they are included in the discussion with clinicians in order to define and refine research questions and topics – part of the commitment to NEEDS LED ie including patients needs as well as clinicians/the health service
- Highlight A.1.2 then D.2.1 then B.3.3 to examine some of the detail of the framework Come & talk to us about the framework at the NIHR stand Copies available at the stand
- Demanding higher standards of researchers in proposals in both design and conduct of study. Assessed via peer review and the deliberation of commissioning boards. Standard application form will help – 3 sources of info on PPI (1) plain english summary (2) the PPI section (3) PPI costings
- Highlight A.1.2 then D.2.1 then B.3.3 to examine some of the detail of the framework Come & talk to us about the framework at the NIHR stand Copies available at the stand
- Reference group – external advisory group of experienced PPI-ers who can evaluate and critique our strategic approach to PPI.
- I can’t do this on my own PPI ref group are one input These members of PPI team are among the internal resource. (they manage front line staff who deal daily with public contributors and PPI issues)
- Plus another member of the PPI team
- Most important of all, some of our public contributors – real people with lived health experience who can bring a critical perspective to all aspects of how we define, prioritise, commission, monitor, publish and disseminate health research