4401 Involve Exploring Impact A4-116pp:Involve Exploring ...

1 Exploring Impact : public involvement in NHS, publichealth and social care researchKristina Staley IOctober 2009 This report has been written by Kristina Staley ofTwoCan Associates with support from staff of theINVOLVE Coordinating report has been written for a broad audience,but with the expectation that people will havesome basic understanding of research. Where words are written in Orange, there aredefinitions available in the jargon buster at the endof the about INVOLVEINVOLVE is a national advisory group whichpromotes and supports greater public involvementin NHS, public health and social care research. Weare funded by the National Institute for HealthResearch (NIHR). Involve works with others towards creating theresearch community of the future which will bebroader, more inclusive and more representative ofthe population as a further information on Involve please visitour website about TwoCanTwoCan Associates carry out research anddevelopment and provide training and support tohelp voluntary and statutory organisations involvepeople who use services in their work.

2 For furtherinformation visit us at this reportThis report should be referenced as:Staley K.(2009) Exploring Impact : public involvement inNHS, public health and social care , Eastleigh. ISBN:978-0-9557053-2-8 Copyright Involve October 2009 This publication is the copyright of Involve . Weare happy for our materials to be downloaded,printed out, copied, used and distributed free ofcharge for non-commercial purposes. Where ourmaterials are copied, used or distributed, thesource of the material must be identified and thecopyright statute acknowledged. No alteration oradaptation of any of the materials may be madewithout obtaining the permission of or distribution of materials either inwhole or in part for a commercial purpose isprohibited without the prior written permission 04 Acknowledgements06 Summary071.

3 Introduction112. Methods153. Context to the findings214. Findings from the literature review25 Impact on the research agenda26 Impact on research design and delivery30 Impact on research ethics50 Impact on the public involved53 Impact on researchers64 Impact on research participants69 Impact on the wider community72 Impact on community organisations78 Impact on implementation/change79 Factors that influence the Impact of involvement84 Reflections from the literature on assessing the Impact of public involvement875. Discussion 91 Jargon buster 97 Appendices 102 References 106 People focused research in the NHS simplycannot be delivered without the involvement ofpatients and the public .

4 No matter how complicated the research, or howbrilliant the researcher, patients and the publicalways offer unique, invaluable insights. Theiradvice when designing, implementing andevaluating research invariably makes studies moreeffective, more credible and often more costefficient as well. I have always taken the view that publicinvolvement in research should be the rule not theexception. It is fundamental to ensure high qualityresearch that brings real benefits for patients, thepublic and the NHS. Involvement means an active partnershipbetween the public and researchers in the researchprocess, rather than using people as the subjects of research. Active involvement can take the formof consultation, collaboration or user control. Thiswould include, for example, public involvement inadvising on a research project, assisting in projectdesign, or carrying out the National Institute for Health Research aims toensure that all our research projects have activepublic involvement right from the start.

5 It is vitallyimportant for us to document and critically assessbest practice and successful outcomes, so that wecan determine the best ways to Involve the public . This review by Involve provides answers to manyof those questions. It helps us understand howand why public involvement impacts on thevarious levels and stages of research, and how itinfluences the implementation of researchfindings. It also challenges us to think more aboutthe way we record public involvement activities sothat the evidence base can continue to develop. The review itself is part of the evidence that shouldbe seen by researchers if they need any furtherproof of the importance of involving patients andthe public in their research. Increasingly, research that involves patients andthe public in the design and evaluation stages iscarrying greater weight and greater significance inthe NHS, in the pharmaceutical, biomedical andmedical devices industries, and most importantly,in NHS Trusts and GPs surgeries keen to useevidence-based treatments and clinical solutions.

6 Professor Dame Sally C. DaviesDirector General of Research and DevelopmentDepartment of Health04 ForewordExploring Impact : public involvement in NHS, public health and social care researchWhat difference does public involvement inresearch make? Members of the public bring perspectives and skillsthat are not always the same as those ofresearchers and health and social careprofessionals. Their involvement helps to ensurethat the entire research process is focused on whatis important to people and is therefore more likelyto produce results that can be used to improvehealth and social care , we need to better understand the bestapproaches to public involvement, and to learnfrom others the difference that it is making. This report starts to answer the question whatdifference does public involvement in researchmake?

7 Not just to the research itself but also toresearchers, research participants and to the widercommunity. The report provides a wealth of information abouthow public involvement has made a difference inpractice and it includes useful case studies thatillustrate the range of ways that the public areinfluencing research. The findings from this review will be of value tomany different audiences motivating andinspiring people who are just starting to getinvolved and supporting and encouraging thosewho are already actively involved in research which has the potential to change and improve ourlives in the Nick PartridgeChair, INVOLVEC hief Executive, Terrence Higgins Trust05 ForewordI would like to say a big thank you to MaryroseTarpey, Helen Hayes and Sarah Buckland for alltheir hard work, advice and support throughoutthis am also very grateful to members of bothAdvisory Groups, Peter Beresford, Vivienne Brown,Alison Faulkner, Laura Serrant-Green, John Sitzia,Sophie Staniszweska and Tracey Williamson for alltheir expertise and guidance.

8 Many thanks to other members of the Evidence,Knowledge and Learning Working Group, JimElliott, Ray Fitzpatrick, Louca Mai-Brady, VanessaPinfold and Diana Rose for their advice would also like to thank Jon Hyslop and Gill Wrenfor their work on searching electronic databasesand identifying articles, Sarah Bayliss and BarbaraDawkins for their admin support and Bec Hanleyfor her help in developing the report special thanks to Rosemary Barber, AnneLangston, Carey Ostrer and Philippa Yeeles forreading the draft report and providing helpfulcomments and I would like to thank everyone whocontacted us and contributed their experience tothis StaleyOctober 2009 Acknowledgements06 Exploring Impact : public involvement in NHS, public health and social care research07 AcknowledgementsSummaryIntroductionPubli c involvement in research is founded on thecore principle that people who are affected byresearch have a right to have a say in what andhow research is undertaken.

9 In recent years, therehas been a growth of interest in publicinvolvement as well as increasing requirements forinvolvement from research funders. This has led toan understandable concern to know exactly whatdifference involvement makes. There has beenmuch interest in obtaining evidence todemonstrate added value and to find out whereand when involvement brings the greatestbenefits. This area of enquiry has come to beframed in terms of the Impact of publicinvolvement in report summarises the findings from aliterature review that aimed to increase ourknowledge of the evidence of the Impact of publicinvolvement on health and social care project was commissioned by Involve . Thework was carried out by Kristina Staley fromTwoCan Associates with support from MaryroseTarpey, Helen Hayes and Sarah Buckland at theINVOLVE Co-ordinating Centre.

10 The work wasoverseen by an advisory usedThe project involved carrying out a structuredreview of the literature obtained from: a collection of articles at the INVOLVEC oordinating Centre a systematic search of electronic databases requests for grey literaturesent out tonetworks via articles were identified by applyinginclusion and exclusion criteria at a number ofstages. A total of 89 articles met all the criteriaand were considered relevant for an in-depthreview. This was carried out using a frameworkwhich helped with categorising the evidence ofdifferent types of Impact and drawing outcommon to the findingsThere is huge variation in how the evidence of theimpact of public involvement has been assessedand reported. The Impact of involvement is alsohighly context-specific. This makes it difficult tojudge the quality of the evidence that is availableor to draw any general conclusions.