How to engage patient partners in health service research: a scoping review protocol

Research Involvement and Engagement

Sarah Cecilie Tscherning¹  Lotte Ørneborg Rodkjær²  Tina Wang Vedelø³  Jeanette Finderup⁴  Hilary Louise Bekker⁵ 

[1] Research Centre for Patient Involvement (ResCenPI), Aarhus University, Aarhus, Central Denmark Region, Denmark;Research Centre for Patient Involvement (ResCenPI), Aarhus University, Aarhus, Central Denmark Region, Denmark;Department of Infectious Diseases, Aarhus University Hospital, Aarhus, Denmark;Research Centre for Patient Involvement (ResCenPI), Aarhus University, Aarhus, Central Denmark Region, Denmark;Department of Neurosurgery, Aarhus University Hospital, Aarhus, Denmark;Research Centre for Patient Involvement (ResCenPI), Aarhus University, Aarhus, Central Denmark Region, Denmark;Department of Renal Medicine, Aarhus University Hospital, Aarhus, Denmark;Research Centre for Patient Involvement (ResCenPI), Aarhus University, Aarhus, Central Denmark Region, Denmark;Leeds Unit for Complex Intervention Development (LUCID), Leeds Institute of Health Sciences, School of Medicine, University of Leeds, Leeds, UK;

关键词: Patient engagement;    Patient and public involvement;    Patient participation;    Patient partner;    Impact;    Health service research;    Scoping review protocol;   

DOI  :  10.1186/s40900-021-00268-z

来源: Springer

【 摘 要 】

BackgroundThe patients’ and the carers’ roles in health service research has changed from being solely participants in studies to also being active partners and co-designers in the research process. Research carried out with or by patient partners is an increasingly accepted component of health service research in many countries, but how researchers can best approach engaging patient partners in the research process is still not clear. There is a need for guidance to support researchers when engaging patient partners and assess how such engagement impacts on research outputs. The aim of this paper is to present a protocol for a scoping review of published literature on how to engage patient partners effectively in the research process. Investigating this aim implies examining: a) how to engage patient partners in the research process; and b) what impact such engagement has on research outputs. This scoping review protocol is the first to examine how to engage patient partners effectively across different diseases and research areas.MethodsA scoping review using a systematic process informed by Arksey and O’Malley’s framework will be carried out across six electronic databases using the terms ‘patient participation’, ‘community participation’, ‘research personnel’, ‘patient and public involvement’ and ‘patient partner’. We will include published reviews concerning engagement of patient partners in the research process in healthcare settings, and exclude studies assessing engagement in treatment and healthcare. Two reviewers will screen the titles and abstracts of articles independently for inclusion, and extract data from articles that meet the inclusion criteria. Where there is disagreement, a third reviewer will be consulted to facilitate consensus. The data elicited will include: author and study characteristics; research aims and findings; description of patient engagement in the research process; and assessment impact. Descriptive data and narrative analysis will synthesize findings.DiscussionTo understand how to engage patient partners effectively in the research process, the impact of such engagement must be taken into consideration to give a qualified suggestion for future guidance. We hope this review will raise awareness of which common elements constitute effective engagement of patient partners in the research process.

【 授权许可】

CC BY