Patient involvement in a qualitative meta-synthesis: lessons learnt

Abstract

Plain English summaryPatients and researchers must work together to improve the relevance and quality of research. Qualitative systematic reviews synthesise findings from a range of published qualitative studies to identify common themes, and can make recommendations for practice or future research. The process of conducting a systemic review offers multiple opportunities for patient involvement.This paper explores the reflections of patient research partners involved in a qualitative systematic review. Patient partners were asked how their experience of the review process could be used to improve patient involvement in future qualitative systematic reviews. Following involvement in a systematic review an exploratory questionnaire was emailed to eight patient research partners. Open ended questions focussed on the training they had received, whether they had enjoyed taking part and how the process could be improved. Patients stated that they needed clear instructions and examples of how to take part in the systematic review. Face to face training was preferred, and it was important that patients were given enough time to complete the task. The study led to benefits for patients including gaining new skills and improved confidence. Each patient also wanted to know how their comments had influenced the paper and wanted feedback on whether they needed any further training. Through reflection with patient partners, recommendations for the involvement of patients in qualitative systematic reviews were developed to allow researchers to successfully involve patients in the review process.Abstract Background Patient involvement in systematic reviews is seen as good practice, yet there is a lack of accessible standardised training for those involved. The aim of this paper is to inform the evidence base on effective ways of involving patients in a qualitative meta-synthesis. This process is evaluated and reflected by patient research partners (PRPs) who provided accounts of their experience. Methods An open ended questionnaire was emailed to eight PRPs who had participated in the analysis of a qualitative meta-synthesis. Questions focussed on the training they received, their experience of coding data and identifying themes, whether they enjoyed taking part in the project and how the process could be improved. Results Our findings point to the importance of detailed training for PRPs, using plain English and clear examples of analysis techniques to improve confidence in engaging with meta-synthesis methods. Face to face training was preferred in order to discuss a PRP’s understanding of the task ahead. Time is an important consideration as PRPs often complete this work on top of their daily commitments and need the time and on-going support to be able to immerse themselves in the data. A focus group was a useful way to discuss the themes but it is important that PRPs understand how their comments have influenced the paper. PRPs reported benefits that included building new skills, improving confidence and gaining knowledge....

Patient and Public Involvement and Engagement in a doctoral research project exploring self‐harm in older adults

“…1 Within SRs, for example, including patient perspectives has shown to improve the quality of studies and relevance of findings to patients. [1][2][3] Despite these benefits, the reporting of Patient Public Involvement and Engagement (PPIE) in SRs is still scarce. 4 In contrast, evidence of the benefits of PPIE in qualitative health research has been increasingly documented.…”

“…The rationale for including a patient and public perspective across a range of research methodologies, including systematic reviews (SR) and qualitative studies, has been advocated by leading health authorities such as the United Kingdom's (UK) National Institute for Health Research advisory group INVOLVE . Within SRs, for example, including patient perspectives has shown to improve the quality of studies and relevance of findings to patients . Despite these benefits, the reporting of Patient Public Involvement and Engagement (PPIE) in SRs is still scarce .…”

Development and formative evaluation of patient research partner involvement in a multi-disciplinary European translational research project

“…During the early planning stages of EuroTEAM, several national RA organisations and patient groups in a range of European countries [ Table 2] were approached in order to seek endorsement of the project, provide advice and support for the funding application, and to identify potential PRPs. Additional PRPs were recruited Attending and contributing to annual scientific meetings and regular teleconferences Development of a glossary resource (WP1-4) Contributing to a meta-synthesis of qualitative literature on public perceptions of predictive testing [13,14] (WP4) Contributing to the development of interview schedules (including question setting) and the interpretation of qualitative data [12,46] (WP4) Contributing to the development of informational resources for those at risk (WP4) Evaluating a web-based platform for the communication of risk information (WP4) Developing a questionnaire for patients undergoing a lymph node biopsy procedure (WP3) Developing informational resources for patients about RA such as the 'Metaphor Project' (a collaboration between Eva C Johansson (PRP) and Dr. Heidi Wähämaa from the Karolinska Institutet) exploring the communication of scientific concepts via the use of metaphors and visual representations Contributing to the project website (e.g. providing news items and reports, creating subtitles for videos) (WP4) Developing lay summaries of EuroTEAM methods and findings (e.g.…”

“…Training for PRPs was provided on an ad-hoc basis for specific research activities (e.g. analysis and interpretation of qualitative data) [14]. Annual project meetings included a day focused specifically on PRPs, where presentations were delivered by the researchers in lay language.…”

“…There has been a growing appreciation of the benefits of PPI within rheumatology research [6,7]. For example, patients have contributed to: the development of questionnaires to assess help-seeking behaviours in patients with new onset rheumatoid arthritis (RA) [8] and hypothetical reactions to the symptoms of RA amongst members of the public [9]; the development of interview schedules [10][11][12]; systematic reviews [13][14][15]; generating research ideas [16]; rheumatology conferences [17] and the development of international research recommendations [18][19][20].…”