Considerations for patient and public involvement and engagement in health research

Olalekan Lee Aiyegbusi; Christel McMullan; Sarah E. Hughes; Grace M. Turner; Anuradhaa Subramanian; Richard Hotham; Elin Haf Davies; Chris Frost; Yvonne Alder; Lisa Agyen; Lewis Buckland; Jennifer Camaradou; Amy Chong; Felicity Jeyes; Sumita Kumar; Karen L. Matthews; Patricia Moore; Jane Ormerod; Gary Price; Michael Saint-Cricq; David Stanton; Anita Walker; Shamil Haroon; Alastair K. Denniston; Melanie J. Calvert; Kirsty Brown; Joht Singh Chandan; Georgios V. Gkoutos; Louise J. Jackson; Janet M. Lord; Tom Marshall; Steven Marwaha; Puja Myles; Krishnarajah Nirantharakumar; Samantha Cruz Rivera; Elizabeth Sapey; Nikita Simms-Williams; Tim Williams; David C. Wraith

doi:10.1038/s41591-023-02445-x

Considerations for patient and public involvement and engagement in health research

Olalekan Lee Aiyegbusi^*, Christel McMullan, Sarah E. Hughes, Grace M. Turner, Anuradhaa Subramanian, Richard Hotham, Elin Haf Davies, Chris Frost, Yvonne Alder, Lisa Agyen, Lewis Buckland, Jennifer Camaradou, Amy Chong, Felicity Jeyes, Sumita Kumar, Karen L. Matthews, Patricia Moore, Jane Ormerod, Gary Price, Michael Saint-CricqDavid Stanton, Anita Walker, Shamil Haroon, Alastair K. Denniston, Melanie J. Calvert, Kirsty Brown, Joht Singh Chandan, Georgios V. Gkoutos, Louise J. Jackson, Janet M. Lord, Tom Marshall, Steven Marwaha, Puja Myles, Krishnarajah Nirantharakumar, Samantha Cruz Rivera, Elizabeth Sapey, Nikita Simms-Williams, Tim Williams, David C. Wraith

^*Corresponding author for this work

Research output: Contribution to journal › Review article › peer-review

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Abstract

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.

Original language	English
Pages (from-to)	1922-1929
Number of pages	8
Journal	Nature Medicine
Volume	29
Issue number	8
Early online date	20 Jul 2023
DOIs	https://doi.org/10.1038/s41591-023-02445-x
Publication status	Published - Aug 2023

Bibliographical note

Funding Information:
We gratefully acknowledge Long COVID SOS, Long COVID Scotland and Long COVID Support who assisted with the recruitment of study participants and PPIE members and the clinicians who assisted with the recruitment of patient partners for the PPIE group. This work is independent research jointly funded by the NIHR and UK Research and Innovation (UKRI; Therapies for Long COVID in non-hospitalised individuals: from symptoms, patient-reported outcomes and immunology to targeted therapies (The TLC Study), COV-LT-0013). The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR, the Department of Health and Social Care or UKRI. The funders had no role in the design and conduct of the study, including the collection, management, analysis and interpretation of the data, and preparation and review of the manuscript.

Publisher Copyright:
© 2023, Springer Nature America, Inc.

ASJC Scopus subject areas

General Biochemistry,Genetics and Molecular Biology

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Aiyegbusi, O. L., McMullan, C., Hughes, S. E., Turner, G. M., Subramanian, A., Hotham, R., Davies, E. H., Frost, C., Alder, Y., Agyen, L., Buckland, L., Camaradou, J., Chong, A., Jeyes, F., Kumar, S., Matthews, K. L., Moore, P., Ormerod, J., Price, G., ... Wraith, D. C. (2023). Considerations for patient and public involvement and engagement in health research. Nature Medicine, 29(8), 1922-1929. https://doi.org/10.1038/s41591-023-02445-x

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abstract = "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 {\textquoteleft}Therapies for Long COVID in non-hospitalised individuals{\textquoteright} (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.",

author = "Aiyegbusi, {Olalekan Lee} and Christel McMullan and Hughes, {Sarah E.} and Turner, {Grace M.} and Anuradhaa Subramanian and Richard Hotham and Davies, {Elin Haf} and Chris Frost and Yvonne Alder and Lisa Agyen and Lewis Buckland and Jennifer Camaradou and Amy Chong and Felicity Jeyes and Sumita Kumar and Matthews, {Karen L.} and Patricia Moore and Jane Ormerod and Gary Price and Michael Saint-Cricq and David Stanton and Anita Walker and Shamil Haroon and Denniston, {Alastair K.} and Calvert, {Melanie J.} and Kirsty Brown and {Singh Chandan}, Joht and Gkoutos, {Georgios V.} and Jackson, {Louise J.} and Lord, {Janet M.} and Tom Marshall and Steven Marwaha and Puja Myles and Krishnarajah Nirantharakumar and Rivera, {Samantha Cruz} and Elizabeth Sapey and Nikita Simms-Williams and Tim Williams and Wraith, {David C.}",

note = "Funding Information: We gratefully acknowledge Long COVID SOS, Long COVID Scotland and Long COVID Support who assisted with the recruitment of study participants and PPIE members and the clinicians who assisted with the recruitment of patient partners for the PPIE group. This work is independent research jointly funded by the NIHR and UK Research and Innovation (UKRI; Therapies for Long COVID in non-hospitalised individuals: from symptoms, patient-reported outcomes and immunology to targeted therapies (The TLC Study), COV-LT-0013). The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR, the Department of Health and Social Care or UKRI. The funders had no role in the design and conduct of the study, including the collection, management, analysis and interpretation of the data, and preparation and review of the manuscript. Publisher Copyright: {\textcopyright} 2023, Springer Nature America, Inc.",

year = "2023",

month = aug,

doi = "10.1038/s41591-023-02445-x",

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volume = "29",

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Aiyegbusi, OL , McMullan, C , Hughes, SE , Turner, GM , Subramanian, A, Hotham, R, Davies, EH, Frost, C, Alder, Y, Agyen, L, Buckland, L, Camaradou, J, Chong, A, Jeyes, F, Kumar, S, Matthews, KL, Moore, P, Ormerod, J, Price, G, Saint-Cricq, M, Stanton, D, Walker, A, Haroon, S , Denniston, AK, Calvert, MJ, Brown, K , Singh Chandan, J , Gkoutos, GV , Jackson, LJ , Lord, JM , Marshall, T , Marwaha, S, Myles, P, Nirantharakumar, K , Rivera, SC , Sapey, E , Simms-Williams, N, Williams, T & Wraith, DC 2023, 'Considerations for patient and public involvement and engagement in health research', Nature Medicine, vol. 29, no. 8, pp. 1922-1929. https://doi.org/10.1038/s41591-023-02445-x

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AU - Subramanian, Anuradhaa

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AU - Moore, Patricia

AU - Ormerod, Jane

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AU - Denniston, Alastair K.

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AU - Gkoutos, Georgios V.

AU - Jackson, Louise J.

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AU - Marwaha, Steven

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AU - Sapey, Elizabeth

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N2 - 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.

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Considerations for patient and public involvement and engagement in health research

Abstract

Bibliographical note

ASJC Scopus subject areas

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