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

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