Published on September 21, 2015
1. ulster.ac.uk Public & Practitioner Engagement & Involvement in Health & Social Care Research: Theory & Practice Dr Patricia Gillen Head of Research & Development for Nurses, Midwives & Allied Health Professions, Southern Health & Social Care Trust/ Honorary Research Fellow, Ulster University
2. Patient and Public Involvement (PPI) in research • INVOLVE: defines public involvement in Research as • “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”. By public’ INVOLVE means patients and their relatives as well as members of the general public. • They differentiate: – Involvement – people are actively involved in research projects and in research organisations. Participation –people take part in a research study. Engagement –information and knowledge about research is shared with the public. http://www.invo.org.uk/find-out-more/what-is-public-involvement-in-research/ 2Dr Patricia Gillen
3. Public & Practitioner Engagement & Involvement in Research (PEIR) Within Maternal, Fetal & Infant Research(MFIR) Centre, a working group called PEIR added to the definition: ‘research being carried out ‘with’ or ‘by’ members of the public and practitioners as stakeholders rather than only ‘on’, ‘about’ or ‘for’ them as participants’. When using the term ‘public’ we include users and potential users of health and social care services, their carers and families. When using the term ‘practitioner’ we include all individuals involved in the planning and provision of health and social care. 3Dr Patricia Gillen
4. Where did it all begin? • ‘The process of involvement encourages a more open-minded approach to what research should be carried out, what forms of healthcare are worth investigating and which health outcomes are important’ (Chalmers 1995) • ‘Organisations should promote awareness amongst the clinical research community of the benefits of patient and public involvement (PPI), and encourage researchers to liaise with users, carers and advocacy groups at the earliest possible stage in the planning and development of their research projects ( DHSSPS, 2006) • DHSSPS Strategy for Personal & Public Involvement in PPI (2014) 4 http://www.research.hscni.net/rd-ppi-representatives Dr Patricia Gillen
5. Public Engagement Service User Involvement Patient Involvement Patient, carer and public involvement PPI PCPI Commonly Used Terminology 5 User/Lay involvement Personal & Public Involvement Dr Patricia Gillen
6. Design (2) Disseminate (6) Implement (7) Identify Research Priorities (1) Grant Proposal (3) Undertake & Manage (4) Analyse & Interpret (5) Monitor & Evaluate (8) 6 Practitioner & Public Engagement & Involvement in Research Cycle Patient and Public Involvement in Health and Social Care Research A Handbook for Researchers RDS London
7. Identify Research Priorities (1) • Help inform research priorities through local user groups and organisations • Be consulted about research topics and priorities, important to them as service users • Collaborate with researchers to identify topics for research • Identify topics for research Patient and Public Involvement in Health and Social Care Research A Handbook for Researchers RDS London 7Dr Patricia Gillen
8. Design(2) • Inform the design of the research study • Clarify the research question and affirm its importance • Ensure the methods selected are appropriate for patients • Assist in creating a recruitment strategy • Review and comment on proposed questionnaires and data collection methods 8Dr Patricia Gillen Patient and Public Involvement in Health and Social Care Research A Handbook for Researchers RDS London
9. Grant Proposal(3) • Ensure that the research proposed and chosen methods are ethical • Inform areas where patients and the public could be involved • Provide ongoing advice on where patients and the public could be involved • Define outcome measures • Advise on the appropriateness of the Lay Summary • Raise awareness about costs of involvement, expenses and prompt researchers to cost for involvement • Be named as co-applicants 9Dr Patricia Gillen Patient and Public Involvement in Health and Social Care Research A Handbook for Researchers RDS London
10. Undertake/Manage (4) • Steer the project throughout the research process as steering group or advisory group • Assist in writing the patient information and consent forms • Aid in designing the detailed protocol • Produce research updates that are patient friendly • Can assist in conducting interviews and surveys 10Dr Patricia Gillen Patient and Public Involvement in Health and Social Care Research A Handbook for Researchers RDS London
11. Analysis & Interpret(5) • Assist the research team in developing themes from data • Be consulted to see if they understand and interpret data in the same way as the research team 11Dr Patricia Gillen Patient and Public Involvement in Health and Social Care Research A Handbook for Researchers RDS London
12. Dissemination(6) • Advise on different avenues for disseminating results • Jointly present the findings with researchers • Write information for local patient groups / hospitals etc • Assist in getting results / findings published on charities / voluntary organisations’ websites • Help distribute results within their informal networks • Produce summaries of findings 12Dr Patricia Gillen Patient and Public Involvement in Health and Social Care Research A Handbook for Researchers RDS London
13. Implementation (7) • Increase the likelihood that results of research are implemented, by adding validity to the findings • Develop patient information for new services / interventions within hospitals, GPs surgeries etc 13Dr Patricia Gillen Patient and Public Involvement in Health and Social Care Research A Handbook for Researchers RDS London
14. Monitor & Evaluate (8) • Have continued involvement with the study to maintain focus and address issues as they arise • Collaborate with researchers to evaluate the research process • Reflect on their role and what they have learned 14Dr Patricia Gillen Patient and Public Involvement in Health and Social Care Research A Handbook for Researchers RDS London
15. Practitioners • Consider the role or practitioners who are not ‘officially’ part of your research team • Need to win their hearts and mind • Gatekeepers to gain access to research participants • Practitioners and their understanding of what you are planning to do is often vital to the project • If actually part of the research team, how does this impact on patients that you are aiming to recruit? 15Dr Patricia Gillen
16. Consent & Ethics • You do not need to obtain formal consent to involve people in your research from an involvement perspective. • The active involvement of patients or members of the public does not generally raise any ethical concerns for the people who are actively involved, even when those people are recruited for this role via the NHS. This is because they are not acting in the same way as research participants. They are acting as specialist advisers, providing valuable knowledge and expertise based on their experience of a health condition or public health concern. Therefore ethical approval is not needed for the active involvement element of the research, (even when people are recruited via the NHS), where people are involved in planning or advising on research e.g. helping to develop a protocol, questionnaire or information sheet, member of advisory group, or co-applicant.” • Full NRES INVOLVE Statement here: www.conres.co.uk/pdfs/INVOLVE_NRESfinalStatement310309.pdf 16Dr Patricia Gillen
17. How to create links with Public & Practitioners • Identify funding opportunities to facilitate initial PPI • Patients, groups and charities • HSC Trusts • Research Networks; including NICRN • Advertise on website/community boards • HSC R&D Division has a pool of PPI representatives who support it in its activities. 17Dr Patricia Gillen
18. Factors which influence whether involvement makes a difference? • Involvement throughout a project • Training • Providing information such as glossary of terms 18Dr Patricia Gillen
19. Challenges Slower pace Researchers values & assumptions Loss of Power Time & Energy required from PPI Reps 19Dr Patricia GillenDerived from Staley 2009
20. Benefits of PPI Critical Friend- reminding researchers of the human side Carers perspective- from the outside looking in Understanding the patients’ view A Better Research Process 20Dr Patricia GillenDerived from Staley 2009
21. Reported Impacts of Involvement in Research Reported impacts of involvement on research Categories of impact identified through literature reviews 1. Impact on the research agenda—the topic, research question and funding decisions 2. Impact on research design and delivery—influencing the research design, tools and choice of method, recruitment, data collection and analysis, writing-up and dissemination. 3. Impact on research ethics—the consent process and developing ethically acceptable research 4. Impact on the people involved 5. Impact on the researchers 6. Impact on participants 7. Impact on the wider community 8. Impact on community organisations 9. Impact on implementation and change 21Dr Patricia Gillen Staley 2009
22. 22 “Start where you are. Use what you have. Do what you can." Arthur Ashe Finally Dr Patricia Gillen
23. 23Dr Patricia Gillen
24. References Brett, J, Stanisezewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, Suleman R. (2014) Mapping the impact of patient and public involvement on health and social care research: a systematic review Health Expectations Oct;17(5):637-50. doi: 10.1111/j.1369-7625.2012.00795.x. Epub 2012 Jul 19 Chalmers, I (1995) What do I want from health research & Researchers when I am a patient? BMJ : 310 (6990): 1315-8 Department of Health, Social Services and Public Safety. Guidance on strengthening Personal and Public Involvement in Health and Social Care. HSC (SQSD) 29/07. Belfast: DHSSPS, 2007. Department of Health, Social Services and Public Safety (DHSSPS) Health and Social Care (Reform) Act (Northern Ireland), 2009. Belfast: HMSO, 2009. Department of Health, Social Services and Public Safety (2012)Guidance for HSC organisations and arrangements for implementing effective Personal and Public Involvement for the PHA and HSCB in the HSC. HSC (SQSD) 03/2012.Belfast: DHSSPS Department of Health, Social Services and Public Safety (2014) Strategy for Personal & Public Involvement in PPI 2nd Ed Belfast: DHSSPS Staley K. (2009) Exploring Impact: public involvement in NHS, public health and social care research. INVOLVE: Eastleigh. 24Dr Patricia Gillen
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