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Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview study.
Health Expect. 2017 06; 20(3):519-528.HE

Abstract

BACKGROUND

There are mounting calls for robust, critical evaluation of the impact of patient and public involvement (PPI) in health research. However, questions remain about how to assess its impact, and whether it should be assessed at all. The debate has thus far been dominated by professionals.

OBJECTIVE

To explore the views of PPI contributors involved in health research regarding the impact of PPI on research, whether and how it should be assessed.

DESIGN

Qualitative interview study.

SETTING AND PARTICIPANTS

Thirty-eight PPI contributors involved in health research across the UK.

RESULTS

Participants felt that PPI has a beneficial impact on health research. They described various impactful roles, which we conceptualize as the 'expert in lived experience', the 'creative outsider', the 'free challenger', the 'bridger', the 'motivator' and the 'passive presence'. Participants generally supported assessing the impact of PPI, while acknowledging the challenges and concerns about the appropriateness and feasibility of measurement. They expressed a range of views about what impacts should be assessed, by whom and how. Individual feedback on impact was seen as an important driver of improved impact and motivation to stay involved.

CONCLUSIONS

While there appears to be widespread support for PPI impact assessment among PPI contributors, their views on what to assess and how are diverse. PPI contributors should be involved as equal partners in debates and decisions about these issues. Individual feedback on impact may increase PPI contributors' potential impact and their motivation to stay involved.

Authors+Show Affiliations

NIHR Oxford Biomedical Research Centre, Oxford, UK. Health Experiences Institute, Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.Health Experiences Research Group, Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK. NIHR Collaboration for Leadership in Applied Health Research and Care Oxford, Oxford Health NHS Foundation Trust, Oxford, UK.UK.NIHR Oxford Biomedical Research Centre, Oxford, UK. Health Experiences Research Group, Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.

Pub Type(s)

Journal Article
Research Support, Non-U.S. Gov't

Language

eng

PubMed ID

27338242

Citation

Crocker, Joanna C., et al. "Is It Worth It? Patient and Public Views On the Impact of Their Involvement in Health Research and Its Assessment: a UK-based Qualitative Interview Study." Health Expectations : an International Journal of Public Participation in Health Care and Health Policy, vol. 20, no. 3, 2017, pp. 519-528.
Crocker JC, Boylan AM, Bostock J, et al. Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview study. Health Expect. 2017;20(3):519-528.
Crocker, J. C., Boylan, A. M., Bostock, J., & Locock, L. (2017). Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview study. Health Expectations : an International Journal of Public Participation in Health Care and Health Policy, 20(3), 519-528. https://doi.org/10.1111/hex.12479
Crocker JC, et al. Is It Worth It? Patient and Public Views On the Impact of Their Involvement in Health Research and Its Assessment: a UK-based Qualitative Interview Study. Health Expect. 2017;20(3):519-528. PubMed PMID: 27338242.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview study. AU - Crocker,Joanna C, AU - Boylan,Anne-Marie, AU - Bostock,Jennifer, AU - Locock,Louise, Y1 - 2016/06/24/ PY - 2016/05/26/accepted PY - 2016/6/25/pubmed PY - 2018/4/25/medline PY - 2016/6/25/entrez KW - evaluation KW - impact KW - patient involvement KW - public involvement KW - user involvement SP - 519 EP - 528 JF - Health expectations : an international journal of public participation in health care and health policy JO - Health Expect VL - 20 IS - 3 N2 - BACKGROUND: There are mounting calls for robust, critical evaluation of the impact of patient and public involvement (PPI) in health research. However, questions remain about how to assess its impact, and whether it should be assessed at all. The debate has thus far been dominated by professionals. OBJECTIVE: To explore the views of PPI contributors involved in health research regarding the impact of PPI on research, whether and how it should be assessed. DESIGN: Qualitative interview study. SETTING AND PARTICIPANTS: Thirty-eight PPI contributors involved in health research across the UK. RESULTS: Participants felt that PPI has a beneficial impact on health research. They described various impactful roles, which we conceptualize as the 'expert in lived experience', the 'creative outsider', the 'free challenger', the 'bridger', the 'motivator' and the 'passive presence'. Participants generally supported assessing the impact of PPI, while acknowledging the challenges and concerns about the appropriateness and feasibility of measurement. They expressed a range of views about what impacts should be assessed, by whom and how. Individual feedback on impact was seen as an important driver of improved impact and motivation to stay involved. CONCLUSIONS: While there appears to be widespread support for PPI impact assessment among PPI contributors, their views on what to assess and how are diverse. PPI contributors should be involved as equal partners in debates and decisions about these issues. Individual feedback on impact may increase PPI contributors' potential impact and their motivation to stay involved. SN - 1369-7625 UR - https://www.unboundmedicine.com/medline/citation/27338242/Is_it_worth_it_Patient_and_public_views_on_the_impact_of_their_involvement_in_health_research_and_its_assessment:_a_UK_based_qualitative_interview_study_ L2 - https://doi.org/10.1111/hex.12479 DB - PRIME DP - Unbound Medicine ER -