Patient and public involvement in research: a review of practical resources for young investigators

Ashokan Arumugam^{1

2

3

4}, Lawrence Rick Phillips⁵, Ann Moore⁶, Senthil D Kumaran⁷, Kesava Kovanur Sampath⁸, Filippo Migliorini⁹, Nicola Maffulli^{10

11

12}, Bathri Narayanan Ranganadhababu¹³, Fatma Hegazy^{14

15}, Angie Botto-van Bemden^{16

17

18

19}

Affiliations

¹ Department of Physiotherapy, College of Health Sciences, University of Sharjah, P.O. Box 27272, Sharjah, United Arab Emirates. ashokanpt@gmail.com.
² Neuromusculoskeletal Rehabilitation Research Group, RIMHS-Research Institute of Medical and Health Sciences, University of Sharjah, P.O. Box 27272, Sharjah, United Arab Emirates. ashokanpt@gmail.com.
³ Sustainable Engineering Asset Management Research Group, RISE-Research Institute of Sciences and Engineering, University of Sharjah, P.O. Box 27272, Sharjah, United Arab Emirates. ashokanpt@gmail.com.
⁴ Adjunct Faculty, Manipal College of Health Professions, Manipal Academy of Higher Education, Manipal, Karnataka, India. ashokanpt@gmail.com.
⁵ Patient Partner, www.RADiabetes.com, Indianapolis, IN, USA.
⁶ Professor Emerita, School of Health Sciences, University of Brighton, 49 Darley Road, Eastbourne, BN20 7UR, UK.
⁷ Department of Physiotherapy, Manipal College of Health Professions, Manipal Academy of Higher Education, Manipal, Karnataka, India.
⁸ Centre for Health and Social Practice, Waikato Institute of Technology, Hamilton, New Zealand.
⁹ Department of Orthopaedic, Trauma, and Reconstructive Surgery, RWTH University Hospital, 52074, Aachen, Germany.
¹⁰ Department of Medicine, Surgery and Dentistry, University of Salerno, Baronissi, SA, 84081, Italy.
¹¹ School of Pharmacy and Bioengineering, Faculty of Medicine, Keele University, Stoke on Trent, ST4 7QB, England, UK.
¹² Queen Mary University of London, Barts and the London School of Medicine and Dentistry, Centre for Sports and Exercise Medicine, Mile End Hospital, London, E1 4DG, England, UK.
¹³ MAPIMS - Melmaruvathur Adhiparasakthi Institute of Medical Sciences and Research, Melmaruvathur, Tamil Nadu, India.
¹⁴ Department of Physiotherapy, College of Health Sciences, University of Sharjah, P.O. Box 27272, Sharjah, United Arab Emirates.
¹⁵ Neuromusculoskeletal Rehabilitation Research Group, RIMHS-Research Institute of Medical and Health Sciences, University of Sharjah, P.O. Box 27272, Sharjah, United Arab Emirates.
¹⁶ Global Patient Ambassador, Musculoskeletal Research International, Inc., Miami, FL, USA.
¹⁷ Patient Partner, Holiday, FL, USA.
¹⁸ EUPATI Fellow, Holiday, FL, USA.
¹⁹ Clinical Research Experts, LLC., Tampa, FL, USA.

PMID: 36895053
PMCID: PMC9996937
DOI: 10.1186/s41927-023-00327-w

Review

Patient and public involvement in research: a review of practical resources for young investigators

Ashokan Arumugam et al. BMC Rheumatol. 2023.

. 2023 Mar 9;7(1):2.

doi: 10.1186/s41927-023-00327-w.

Authors

Affiliations

¹ Department of Physiotherapy, College of Health Sciences, University of Sharjah, P.O. Box 27272, Sharjah, United Arab Emirates. ashokanpt@gmail.com.
² Neuromusculoskeletal Rehabilitation Research Group, RIMHS-Research Institute of Medical and Health Sciences, University of Sharjah, P.O. Box 27272, Sharjah, United Arab Emirates. ashokanpt@gmail.com.
³ Sustainable Engineering Asset Management Research Group, RISE-Research Institute of Sciences and Engineering, University of Sharjah, P.O. Box 27272, Sharjah, United Arab Emirates. ashokanpt@gmail.com.
⁴ Adjunct Faculty, Manipal College of Health Professions, Manipal Academy of Higher Education, Manipal, Karnataka, India. ashokanpt@gmail.com.
⁵ Patient Partner, www.RADiabetes.com, Indianapolis, IN, USA.
⁶ Professor Emerita, School of Health Sciences, University of Brighton, 49 Darley Road, Eastbourne, BN20 7UR, UK.
⁷ Department of Physiotherapy, Manipal College of Health Professions, Manipal Academy of Higher Education, Manipal, Karnataka, India.
⁸ Centre for Health and Social Practice, Waikato Institute of Technology, Hamilton, New Zealand.
⁹ Department of Orthopaedic, Trauma, and Reconstructive Surgery, RWTH University Hospital, 52074, Aachen, Germany.
¹⁰ Department of Medicine, Surgery and Dentistry, University of Salerno, Baronissi, SA, 84081, Italy.
¹¹ School of Pharmacy and Bioengineering, Faculty of Medicine, Keele University, Stoke on Trent, ST4 7QB, England, UK.
¹² Queen Mary University of London, Barts and the London School of Medicine and Dentistry, Centre for Sports and Exercise Medicine, Mile End Hospital, London, E1 4DG, England, UK.
¹³ MAPIMS - Melmaruvathur Adhiparasakthi Institute of Medical Sciences and Research, Melmaruvathur, Tamil Nadu, India.
¹⁴ Department of Physiotherapy, College of Health Sciences, University of Sharjah, P.O. Box 27272, Sharjah, United Arab Emirates.
¹⁵ Neuromusculoskeletal Rehabilitation Research Group, RIMHS-Research Institute of Medical and Health Sciences, University of Sharjah, P.O. Box 27272, Sharjah, United Arab Emirates.
¹⁶ Global Patient Ambassador, Musculoskeletal Research International, Inc., Miami, FL, USA.
¹⁷ Patient Partner, Holiday, FL, USA.
¹⁸ EUPATI Fellow, Holiday, FL, USA.
¹⁹ Clinical Research Experts, LLC., Tampa, FL, USA.

PMID: 36895053
PMCID: PMC9996937
DOI: 10.1186/s41927-023-00327-w

Abstract

Patient and public involvement (PPI) in every aspect of research will add valuable insights from patients' experiences, help to explore barriers and facilitators to their compliance/adherence to assessment and treatment methods, bring meaningful outcomes that could meet their expectations, needs and preferences, reduce health care costs, and improve dissemination of research findings. It is essential to ensure competence of the research team by capacity building with available resources on PPI. This review summarizes practical resources for PPI in various stages of research projects-conception, co-creation, design (including qualitative or mixed methods), execution, implementation, feedback, authorship, acknowledgement and remuneration of patient research partners, and dissemination and communication of research findings with PPI. We have briefly summarized the recommendations and checklists, amongst others, for PPI in rheumatic and musculoskeletal research (e.g. the European Alliance of Associations for Rheumatology (EULAR) recommendations, the Core Outcome Measures in Effectiveness Trials (COMET) checklist and the Guidance for Reporting Involvement of Patients and the Public (GRIPP) checklist). Various tools that could be used to facilitate participation, communication and co-creation of research projects with PPI are highlighted in the review. We shed light on the opportunities and challenges for young investigators involving PPI in their research projects, and have summarized various resources that could be used to enhance PPI in various phases/aspects of research. A summary of web links to various tools and resources for PPI in various stages of research is provided in Additional file 1.

Keywords: Guidance; How-to guide; Patient and public involvement; Patient engagement; Patient experience; Patient research partner.

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Conflict of interest statement

None.

Figures

**Fig. 1**
Seven practical ways to get started with patient and public involvement (PPI) in research. *EULAR* European League Against Rheumatism, *FIRST* Facilitate, Identify, Respect, Support and Training, *GLSP* Good Lay Summary Practice, *GRIPP* The Guidance for Reporting Involvement of Patients and the Public, *ICMJE* International Committee of Medical Journal Editors, *PFDD* Patient-Focused Drug development, *PFMD* Patient Engagement for Medicines Development

See this image and copyright information in PMC

References

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1. Smits D-W, Van Meeteren K, Klem M, Alsem M, Ketelaar M. Designing a tool to support patient and public involvement in research projects: the Involvement Matrix. Res Involv Engag. 2020;6(1):1–7. - PMC - PubMed
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Patient and public involvement in research: a review of practical resources for young investigators

Affiliations

Patient and public involvement in research: a review of practical resources for young investigators

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

Publication types

LinkOut - more resources

Full Text Sources