Considerations for patient and public involvement and engagement in health research

被引：18

作者：

Aiyegbusi, Olalekan Lee ^{[1
,2
,3
,4
,5
,6
]}

McMullan, Christel ^{[1
,2
,3
,4
,5
,6
,7
,8
,9
]}

Hughes, Sarah ^{[1
,2
,3
,4
,5
,6
]}

Turner, Grace ^{[1
,3
,4
,7
,8
,9
]}

Subramanian, Anuradhaa ^{[1
]}

Hotham, Richard ^{[1
]}

Davies, Elin Haf ^{[10
]}

Frost, Chris K. ^{[10
]}

Alder, Yvonne J. ^{[11
]}

Agyen, Lisa ^{[11
]}

Buckland, Lewis ^{[11
]}

Camaradou, Jennifer ^{[11
]}

Chong, Amy V. ^{[11
]}

Jeyes, Felicity J. ^{[11
]}

Kumar, Sumita M. ^{[11
]}

Matthews, Karen ^{[11
]}

Moore, Patricia ^{[11
]}

Ormerod, Jane ^{[11
]}

Price, Gary ^{[11
]}

Saint-Cricq, Michael ^{[11
]}

Stanton, David ^{[11
]}

Walker, Anita ^{[1
,2
,3
,4
,5
,6
]}

Haroon, Shamil ^{[1
]}

Denniston, Alastair C. ^{[12
]}

Calvert, Melanie ^{[1
,2
,3
,4
,5
,6
,7
,8
,9
,13
,14
]}

TLC Study Grp

Brown, Kirsty ^{[12
,13
,15
,16
,17
,18
]}

Chandan, Joht Singh

Gkoutos, Georgios V.

Jackson, Louise J.

Lord, Janet M.

Marshall, Tom

Marwaha, Steven ^{[18
]}

Myles, Puja ^{[19
]}

Nirantharakumar, Krishnarajah

Rivera, Samantha Cruz

Sapey, Elizabeth

Simms-Williams, Nikita

Williams, Tim ^{[19
]}

Wraith, David C.

机构：

[1] Univ Birmingham, Inst Appl Hlth Res, Birmingham, England

[2] Univ Birmingham, Birmingham Hlth Partners Ctr Regulatory Sci & Inno, Birmingham, England

[3] Univ Birmingham, Inst Appl Hlth Res, Coll Med & Dent Sci, Ctr Patient Reported Outcomes Res CPROR, Birmingham, England

[4] Univ Birmingham, Birmingham Biomed Res Ctr, Natl Inst Hlth & Care Res NIHR, Birmingham, England

[5] Univ Birmingham, Natl Inst Hlth & Care Res NIHR, Appl Res Collaborat ARC West Midlands, Birmingham, England

[6] Univ Birmingham, NIHR Blood & Transplant Res Unit BTRU Precis Trans, Birmingham, England

[7] Univ Hosp Birmingham NHS Fdn Trust, NIHR Surg Reconstruct & Microbiol Res Ctr, Birmingham, England

[8] Univ Birmingham, Birmingham, England

[9] Univ Birmingham, Ctr Trauma Sci Res, Birmingham, England

[10] Aparito, Wrexham, Wales

[11] Univ Birmingham, CPROR, Birmingham, England

[12] Univ Hosp Birmingham NHS Fdn Trust, Birmingham, England

[13] Midlands Hlth Data Res UK, Birmingham, England

[14] Univ Birmingham, DEMAND Hub, Birmingham, England

[15] Univ Birmingham, Inst Canc & Genom Sci, Birmingham, England

[16] Univ Birmingham, Ctr Hlth Data Sci, Birmingham, England

[17] Univ Birmingham, Inst Inflammat & Ageing, Birmingham, England

[18] Univ Birmingham, Inst Mental Hlth, Birmingham, England

[19] Clin Practice Res Datalink Med & Healthcare Prod R, London, England

来源：

NATURE MEDICINE | 2023年 / 29卷 / 08期

基金：

英国科研创新办公室;

关键词：

D O I：

10.1038/s41591-023-02445-x

中图分类号：

Q5 [生物化学]; Q7 [分子生物学];

学科分类号：

071010 ; 081704 ;

摘要：

The authors generate a checklist of key considerations to guide patient and public involvement and engagement in future research, informed by lessons from the TLC study, which evaluated therapies for long COVID. Patient and public involvement and engagement (PPIE) can provide valuable insights into the experiences of those living with and affected by a disease or health condition. Inclusive collaboration between patients, the public and researchers can lead to productive relationships, ensuring that health research addresses patient needs. Guidelines are available to support effective PPIE; however, evaluation of the impact of PPIE strategies in health research is limited. In this Review, we evaluate the impact of PPIE in the 'Therapies for Long COVID in non-hospitalised individuals' (TLC) Study, using a combination of group discussions and interviews with patient partners and researchers. We identify areas of good practice and reflect on areas for improvement. Using these insights and the results of a survey, we synthesize two checklists of considerations for PPIE, and we propose that research teams use these checklists to optimize the impact of PPIE for both patients and researchers in future studies.

引用

页码：1922 / 1929

页数：8

共 50 条

[41] Patient and public involvement in health research: Ethical imperative and/or radical challenge?
Rose, Diana
JOURNAL OF HEALTH PSYCHOLOGY, 2014, 19 (01) : 149 - 158
[42] Patient and Public Involvement in Occupational Therapy Health Research: A Scoping Review
Rossvoll, Toril Beate
Hanssen, Tove Aminda
Rosenvinge, Jan H.
Liabo, Kristin
Pettersen, Gunn
OTJR-OCCUPATIONAL THERAPY JOURNAL OF RESEARCH, 2023, 43 (01): : 119 - 126
[43] Integrating patient and public involvement and engagement in translational medicine
Shaw, Karen L.
Calvert, Melanie J.
Borrow, Persephone
Chakera, Evelyn
Chakraverty, Ronjon
Hughes, Sarah E.
Khatsuria, Foram
Kinsella, Francesca A. M.
McMullan, Christel
Richardson-Abraham, Julie
Yarosh, Vlada
Aiyegbusi, Olalekan Lee
LANCET, 2024, 404 (10455): : 828 - 831
[44] Patient and Public Involvement in health research: evidence on the practice of participant selection
Lander, J.
Dierks, M. L.
EUROPEAN JOURNAL OF PUBLIC HEALTH, 2020, 30
[45] The complexities of developing equal relationships in patient and public involvement in health research
Pearce, Caroline
SOCIAL THEORY & HEALTH, 2021, 19 (04) : 362 - 379
[46] Patient and public involvement in mental health research: En route to maturity?
Faulkner, Alison
Chambers, Mary
HEALTH EXPECTATIONS, 2021, 24 : 1 - 2
[47] Patient and public involvement in paediatric intensive care research: Considerations, challenges and facilitating factors
Menzies J.C.
Morris K.P.
Duncan H.P.
Marriott J.F.
Research Involvement and Engagement, 2 (1)
[48] Patient and public involvement in health research in Norway: a survey among researchers and patient organisations
Aas S.N.
Distefano M.B.
Pettersen I.
Gravrok B.
Nordvoll L.Y.
Bjaastad J.F.
Grimsgaard S.
Research Involvement and Engagement, 9 (1)
[49] Public and patient involvement in health and health care
Calman, K
BRITISH DENTAL JOURNAL, 1996, 180 (01) : 31 - 36
[50] PATIENT AND PUBLIC INVOLVEMENT IN STROKE RESEARCH
Charalambous, M.
Kountouri, A.
Phylactou, P.
Annoni, J. -M.
Kambanaros, M.
INTERNATIONAL JOURNAL OF STROKE, 2022, 17 (3_SUPPL) : 142 - 142

← 1 2 3 4 5 →