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

被引:18
|
作者
Arumugam, Ashokan [1 ,2 ,3 ,4 ]
Phillips, Lawrence Rick [5 ]
Moore, Ann [6 ]
Kumaran, Senthil D. D. [7 ]
Sampath, Kesava Kovanur [8 ]
Migliorini, Filippo [9 ]
Maffulli, Nicola [10 ,11 ,12 ]
Ranganadhababu, Bathri Narayanan [13 ]
Hegazy, Fatma [1 ,2 ]
Botto-van Bemden, Angie [14 ,15 ]
机构
[1] Univ Sharjah, Coll Hlth Sci, Dept Physiotherapy, POB 27272, Sharjah, U Arab Emirates
[2] Univ Sharjah, RIMHS Res Inst Med & Hlth Sci, Neuromusculoskeletal Rehabil Res Grp, POB 27272, Sharjah, U Arab Emirates
[3] Univ Sharjah, RISE Res Inst Sci & Engn, Sustainable Engn Asset Management Res Grp, POB 27272, Sharjah, U Arab Emirates
[4] Manipal Acad Higher Educ, Manipal Coll Hlth Profess, Adjunct Fac, Manipal, Karnataka, India
[5] Www RADiabetes Com, Indianapolis, IN USA
[6] Univ Brighton, Sch Hlth Sci, 49 Darley Rd, Eastbourne BN20 7UR, England
[7] Manipal Acad Higher Educ, Manipal Coll Hlth Profess, Dept Physiotherapy, Manipal, Karnataka, India
[8] Waikato Inst Technol, Ctr Hlth & Social Practice, Hamilton, New Zealand
[9] RWTH Univ Hosp, Dept Orthopaed Trauma & Reconstruct Surg, D-52074 Aachen, Germany
[10] Univ Salerno, Dept Med Surg & Dent, I-84081 Baronissi, SA, Italy
[11] Keele Univ, Fac Med, Sch Pharm & Bioengn, Stoke On Trent ST4 7QB, England
[12] Queen Mary Univ London, Barts & London Sch Med & Dent, Mile End Hosp, Ctr Sports & Exercise Med, London E1, England
[13] MAPIMS Melmaruvathur Adhiparasakthi Inst Med Sci &, Melmaruvathur, Tamil Nadu, India
[14] Musculoskeletal Res Int Inc, Miami, FL USA
[15] Clin Res Experts LLC, Tampa, FL USA
关键词
Patient and public involvement; Patient engagement; Patient experience; Patient research partner; Guidance; How-to guide; RESEARCH PARTNERS; RECOMMENDATIONS; CHALLENGES;
D O I
10.1186/s41927-023-00327-w
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
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.
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页数:14
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