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

被引：0
作者：
Ashokan Arumugam
Lawrence Rick Phillips
Ann Moore
Senthil D. Kumaran
Kesava Kovanur Sampath
Filippo Migliorini
Nicola Maffulli
Bathri Narayanan Ranganadhababu
Fatma Hegazy
Angie Botto-van Bemden
机构：
[1] University of Sharjah,Department of Physiotherapy, College of Health Sciences
[2] University of Sharjah,Neuromusculoskeletal Rehabilitation Research Group, RIMHS–Research Institute of Medical and Health Sciences
[3] University of Sharjah,Sustainable Engineering Asset Management Research Group, RISE
[4] Manipal College of Health Professions,Research Institute of Sciences and Engineering
[5] Manipal Academy of Higher Education,Adjunct Faculty
[6] Patient Partner,Professor Emerita, School of Health Sciences
[7] www.RADiabetes.com,Department of Physiotherapy
[8] University of Brighton,Centre for Health and Social Practice
[9] Manipal College of Health Professions,Department of Orthopaedic, Trauma, and Reconstructive Surgery
[10] Manipal Academy of Higher Education,Department of Medicine, Surgery and Dentistry
[11] Waikato Institute of Technology,School of Pharmacy and Bioengineering, Faculty of Medicine
[12] RWTH University Hospital,Queen Mary University of London, Barts and the London School of Medicine and Dentistry
[13] University of Salerno,Global Patient Ambassador
[14] Keele University,undefined
[15] Centre for Sports and Exercise Medicine,undefined
[16] Mile End Hospital,undefined
[17] MAPIMS - Melmaruvathur Adhiparasakthi Institute of Medical Sciences and Research,undefined
[18] Musculoskeletal Research International,undefined
[19] Inc.,undefined
[20] Patient Partner,undefined
[21] EUPATI Fellow,undefined
[22] Clinical Research Experts,undefined
[23] LLC.,undefined
来源：
BMC Rheumatology | / 7卷
关键词：
Patient and public involvement; Patient engagement; Patient experience; Patient research partner; Guidance; How-to guide;
D O I：
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中图分类号：
学科分类号：
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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