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Considerations for patient and public involvement and engagement in health research

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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.

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Fig. 1: Patient and public involvement in the TLC Study.

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Acknowledgements

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.

Author information

Authors and Affiliations

  1. Institute of Applied Health Research, University of Birmingham, Birmingham, UK

    Olalekan Lee Aiyegbusi, Christel McMullan, Sarah E. Hughes, Grace M. Turner, Anuradhaa Subramanian, Richard Hotham, Anita Walker, Shamil Haroon, Melanie J. Calvert, Kirsty Brown, Joht Singh Chandan, Louise J. Jackson, Tom Marshall, Krishnarajah Nirantharakumar, Samantha Cruz Rivera & Nikita Simms-Williams

  2. Birmingham Health Partners Centre for Regulatory Science and Innovation, University of Birmingham, Birmingham, UK

    Olalekan Lee Aiyegbusi, Christel McMullan, Sarah E. Hughes, Anita Walker & Melanie J. Calvert

  3. Centre for Patient Reported Outcomes Research (CPROR), Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK

    Olalekan Lee Aiyegbusi, Christel McMullan, Sarah E. Hughes, Grace M. Turner, Anita Walker & Melanie J. Calvert

  4. National Institute for Health and Care Research (NIHR) Birmingham Biomedical Research Centre, University of Birmingham, Birmingham, UK

    Olalekan Lee Aiyegbusi, Christel McMullan, Sarah E. Hughes, Grace M. Turner, Anita Walker & Melanie J. Calvert

  5. National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) West Midlands, University of Birmingham, Birmingham, UK

    Olalekan Lee Aiyegbusi, Christel McMullan, Sarah E. Hughes, Anita Walker & Melanie J. Calvert

  6. NIHR Blood and Transplant Research Unit (BTRU) in Precision Transplant and Cellular Therapeutics, University of Birmingham, Birmingham, UK

    Olalekan Lee Aiyegbusi, Christel McMullan, Sarah E. Hughes, Anita Walker & Melanie J. Calvert

  7. NIHR Surgical Reconstruction and Microbiology Research Centre University Hospitals Birmingham NHS Foundation Trust and University of Birmingham, Birmingham, UK

    Christel McMullan, Grace M. Turner & Melanie J. Calvert

  8. Centre for Trauma Science Research, University of Birmingham, Birmingham, UK

    Christel McMullan, Grace M. Turner & Melanie J. Calvert

  9. Aparito, Wrexham, UK

    Elin Haf Davies & Chris Frost

  10. CPROR, University of Birmingham, Birmingham, UK

    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

  11. University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK

    Alastair K. Denniston & Georgios V. Gkoutos

  12. Midlands Health Data Research UK, Birmingham, UK

    Melanie J. Calvert, Georgios V. Gkoutos & Krishnarajah Nirantharakumar

  13. DEMAND Hub, University of Birmingham, Birmingham, UK

    Melanie J. Calvert

  14. Institute of Cancer and Genomic Sciences, University of Birmingham, Birmingham, UK

    Georgios V. Gkoutos

  15. Centre for Health Data Science, University of Birmingham, Birmingham, UK

    Georgios V. Gkoutos

  16. Institute of Inflammation and Ageing, University of Birmingham, Birmingham, UK

    Janet M. Lord & Elizabeth Sapey

  17. Institute for Mental Health, University of Birmingham, Birmingham, UK

    Steven Marwaha

  18. Clinical Practice Research Datalink, Medicines and Healthcare Products Regulatory, London, UK

    Puja Myles & Tim Williams

  19. Institute of Immunology and Immunotherapy, University of Birmingham, Birmingham, UK

    David C. Wraith

Authors
  1. Olalekan Lee Aiyegbusi
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  2. Christel McMullan
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  3. Sarah E. Hughes
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  4. Grace M. Turner
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  5. Anuradhaa Subramanian
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  6. Richard Hotham
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  7. Elin Haf Davies
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  8. Chris Frost
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  9. Yvonne Alder
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  10. Lisa Agyen
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  11. Lewis Buckland
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  12. Jennifer Camaradou
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  13. Amy Chong
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  14. Felicity Jeyes
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  15. Sumita Kumar
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  16. Karen L. Matthews
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  17. Patricia Moore
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  18. Jane Ormerod
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  19. Gary Price
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  20. Michael Saint-Cricq
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  21. David Stanton
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  22. Anita Walker
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  23. Shamil Haroon
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  24. Alastair K. Denniston
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  25. Melanie J. Calvert
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Consortia

TLC Study Group

  • 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

Contributions

Y.A., L.A., L.B., J.C., A.C., F.J., S.K., K.L.M., P.M., J.O., G.P., M.S.-C. and D.S. are patient partners affiliated with CPROR. O.L.A. and M.J.C. conceptualized the study. O.L.A., M.J.C., Y.A., L.A., L.B., J.C., A.C., F.J., S.K., K.L.M., P.M., G.P., M.S.-C. and D.S. provided input on the survey design. O.L.A. analyzed the survey results and drafted the manuscript. C.M. created Fig. 1. S.E.H., C.M., G.M.T., A.S., R.H., E.H.D., C.F., S.H., M.J.C., Y.A., L.A., L.B., J.C., A.C., F.J., S.K., K.L.M., P.M., J.O., G.P., M.S.-C., D.S. and O.L.A. and members of the TLC Study Group read, revised and approved the final manuscript. The views expressed in this article are those of the author(s) and not necessarily those of the NIHR, or the Department of Health and Social Care.

Corresponding author

Correspondence to Olalekan Lee Aiyegbusi.

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Competing interests

O.L.A. declares personal fees from Gilead Sciences, Merck and GlaxoSmithKline outside the submitted work and receives funding from the NIHR Birmingham Biomedical Research Centre, NIHR Applied Research Collaboration (ARC), West Midlands, NIHR Blood and Transplant Research Unit (BTRU) in Precision Transplant and Cellular Therapeutics at the University of Birmingham and University Hospitals Birmingham NHS Foundation, Innovate UK (part of UKRI), Gilead Sciences, Merck, Anthony Nolan and Sarcoma UK. S.E.H. receives funding from the NIHR ARC, West Midlands, NIHR BTRU in Precision Transplant and Cellular Therapeutics at the University of Birmingham and Anthony Nolan. S.E.H. declares personal fees from Cochlear and Aparito outside the submitted work. C.M. receives funding from the NIHR Surgical Reconstruction and Microbiology Research Centre, the NIHR BTRU in Precision Transplant and Cellular Therapeutics, Innovate UK and Anthony Nolan, and has received personal fees from Aparito outside the submitted work. K.L.M. is a Trustee and volunteer at Long COVID SOS. K.L.M. is on the Long COVID Advisory Board for Dysautonomia International and is employed by the NIHR. J.C. receives funding from NIHR on PPI from a study at UCL (NIHR132914) and a study at University Hospitals Bristol (NIHR203304). J.C. is a lay member on the NICE COVID-19 expert panel and a citizen partner on the COVID END Evidence Synthesis Global Horizon Scanning panel. J.C. declares personal fees from MEDABLE, GlaxoSmithKline and Roche Canada outside of the submitted work. S.H. receives funding from NIHR and UKRI. M.J.C. received personal fees from Astellas, Aparito, CIS Oncology, Takeda, Merck, Daiichi Sankyo, Glaukos, GSK and the Patient-Centered Outcomes Research Institute outside the submitted work. In addition, a family member owns shares in GSK. M.C. receives funding from the NIHR Birmingham Biomedical Research Centre, NIHR Surgical Reconstruction and Microbiology Research Centre, NIHR BTRU in Precision Transplant and Cellular Therapeutics, and NIHR ARC West Midlands at the University of Birmingham and University Hospitals Birmingham NHS Foundation Trust, Health Data Research UK, Innovate UK (part of UKRI), Macmillan Cancer Support, European Regional Development Fund—Demand Hub, SPINE UK, UKRI, UCB Pharma, GSK, Anthony Nolan and Gilead Sciences. All other authors declare no competing interests. This study was approved by the Health Research Authority and the West Midlands Solihull-Research Ethics Committee (IRAS project ID: 296374; REC reference: 21/WM/0203).

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Aiyegbusi, O.L., McMullan, C., Hughes, S.E. et al. Considerations for patient and public involvement and engagement in health research. Nat Med 29, 1922–1929 (2023). https://doi.org/10.1038/s41591-023-02445-x

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