The extent, quality and impact of patient and public involvement in primary care research: A mixed methods study

被引：47

作者：

Blackburn S. ^{[1
]}

McLachlan S. ^{[2
]}

Jowett S. ^{[3
]}

Kinghorn P. ^{[3
]}

Gill P. ^{[4
]}

Higginbottom A. ^{[1
,5
]}

Rhodes C. ^{[1
,5
]}

Stevenson F. ^{[6
]}

Jinks C. ^{[1
]}

机构：

[1] Research Institute for Primary Care & Health Sciences, Keele University, Keele, Staffordshire

[2] Department of Physiotherapy, Division of Health and Social Care Research, King’s College London, London

[3] Health Economics Unit, School of Health and Population Sciences, University of Birmingham, Birmingham

[4] Social Science and Systems in Health, Warwick Medical School, University of Warwick, Coventry

[5] PPI Contributor, Keele

[6] The Research Department of Primary Care and Population Health, University College London, London

来源：

Research Involvement and Engagement | / 4卷 / 1期

关键词：

Cost and consequences framework; Impact; Mixed methods; Patient and public involvement; Primary care research; Quality;

D O I：

10.1186/s40900-018-0100-8

中图分类号：

学科分类号：

摘要：

Background: To improve the lives of patients in primary care requires the involvement of service users in primary care research. We aimed to explore the extent, quality and impact of patient and public involvement (PPI) in primary care research. Methods: We extracted information about PPI from grant applications, reports and an electronic survey of researchers of studies funded by the NIHR School for Primary Care Research (SPCR). We applied recognised quality indicators to assess the quality of PPI and assessed its impact on research. Results: We examined 200 grant applications and reports of 181 projects. PPI was evident in the development of 47 (24%) grant applications. 113 (57%) grant applications included plans for PPI during the study, mostly in study design, oversight, and dissemination. PPI during projects was reported for 83 (46%) projects, including (Continued on next page) (Continued from previous page) designing study materials and managing the research. We identified inconsistencies between planned and reported PPI. PPI varied by study design, health condition and study population. Of 46 (24%) of 191 questionnaires completed, 15 reported PPI activity. Several projects showed best practice according to guidelines, in terms of having a PPI budget, supporting PPI contributors, and PPI informing recruitment issues. However few projects offered PPI contributors training, used PPI to develop information for participants about study progress, and had PPI in advising on dissemination. Beneficial impacts of PPI in designing studies and writing participant information was frequently reported. Less impact was reported on developing funding applications, managing or carrying out the research. The main cost of PPI for researchers was their time. Many researchers found it difficult to provide information about PPI activities. Our findings informed: • a new Cost and Consequences Framework for PPI in primary care research highlighting financial and non-financial costs, plus the benefits and harms of PPI • Fifteen co-produced recommendations to improve PPI in research and within the SPCR. Conclusions: The extent, quality and impact of PPI in primary care research is inconsistent across research design and topics. Pockets of good practice were identified making a positive impact on research. The new Cost and Consequences Framework may help others assess the impact of PPI. © The Author(s) 2018.

引用

共 29 条

[1]

NIHR Annual Report 2015/16: National Institute for Health Research, (2016)

[2]

Briefing notes for researchers: Involving the public in NHS, Public Health and Social Care Research: INVOLVE, (2012)

[3]

Going the Extra Mile -A Strategic Review of Public Involvement in the National Institute for Health Research: National Institute for Health Research, (2015)

[4]

Public Involvement in Research: Values and Principles Framework: INVOLVE, (2016)

[5]

Mathie E., Wilson P., Poland F., McNeilly E., Howe A., Staniszewska S., Et al., Consumer involvement in health research: A UK scoping and survey, Int J Consum Stud, 38, 1, pp. 35-44, (2014)

[6]

Gamble C., Dudley L., Allam A., Bell P., Goodare H., Hanley B., Et al., Patient and public involvement in the early stages of clinical trial development: A systematic cohort investigation, BMJ Open, 4, 7, (2014)

[7]

Brett J., Staniszewska S., Mockford C., Herron-Marx S., Hughes J., Tysall C., Et al., Mapping the impact of patient and public involvement on health and social care research: A systematic review, Health Expect, 17, 5, pp. 637-650, (2014)

[8]

Thompson J., Bissell P., Cooper C.L., Armitage C.J., Barber R., Exploring the impact of patient and public involvement in a Cancer research setting, Qual Health Res, 24, 1, pp. 46-54, (2013)

[9]

Ennis L., Wykes T., Impact of patient involvement in mental health research: Longitudinal study, Br J Psychiatry, 203, 5, pp. 381-386, (2013)

[10]

Domecq J., Prutsky G., Elraiyah T., Wang Z., Nabhan M., Shippee N., Et al., Patient engagement in research: A systematic review, BMC Health Serv Res, 14, 1, (2014)

← 1 2 3 →