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

Abstract

Plain English summaryPatient and public involvement (PPI) improves the quality of health research and ensures that research is relevant to patients' needs. Though PPI is increasingly evident in clinical and health services research, there are few examples in the research literature of effective PPI in translational and laboratory-based research. In this paper, we describe the development and evaluation of PPI in a multi-centre European project (EuroTEAM -Towards Early biomarkers in Arthritis Management) that included both translational and laboratory-based and psychosocial research. We found that although most PPI in EuroTEAM was centred around the psychosocial research, there were examples of PPI in the laboratory studies. As the project evolved, researchers became better at accommodating PPI and identifying PPI opportunities. It was generally agreed that PPI had a positive impact on the project overall, particularly on public engagement with the research. We concluded that the inclusion of both psychosocial and laboratory-based research in the same project facilitated PPI across all aspects of the research. In future projects, we would try to specify individual PPI activities in more detail at the project-planning stage, and better accommodate patient partners who are not native speakers of English. AbstractBackground Patient and public involvement (PPI) enhances research quality and relevance and is central to contemporary health policy. The value of PPI has been recognised in rheumatology research, though there are limited examples of PPI in basic and translational science. The EU FP7 funded 'EuroTEAM' (Towards Early biomarkers in Arthritis Management) project was established to develop biomarker-based approaches to predict the future development of rheumatoid arthritis and incorporated psychosocial research to investigate the perceptions of 'at risk' individuals about predictive testing, and to develop informational resources about rheumatoid arthritis (RA) risk. Patient involvement was central to EuroTEAM from the inception of the project. The objective of this paper is to describe the development of (Continued on next page)

Patient engagement in preclinical laboratory research: A scoping review

“…Three themes outlined lessons to consider before engaging patient partners. These included 'providing educational resources to team members' covering sufficient background information and rationale for the project, planning to 'recognize patient partner contributions' through compensation or acknowledgement for example, and the importance of 'timing patient Rheault et al [18] x x x N/R Pre-conference and conference events (NR) van den Berg et al [19] x x x x N/R Face-to-face workshop (2-days) Boenink et al [20] x N/R One-time engagement (N/R) Russell et al [21] x x x x 66 2 events (1-year apart) with email follow-up (N/R) Tamagnini et al [22] x x x 3 N/R Frazier et al [23] x x x x 4885 One-time engagement (N/R) Talebizadeh et al [24] x x x 12 Attendance at 6 sessions over a 12-month period McDonnell et al [25] x 523 One-time engagement (N/R) Parsons et al [26] x 63 One focus group (90 min) Zoeller [27] x x 71 Attendance at meetings (Two weekends) Filocamo [28] x N/R Attendance at several meetings and workshops (N/R) Black and Brockway-Lunardi [29] x x N/R N/R Godard et al [30] x 1,568 One-time engagement (N/R) *Haga et al [31] x 159 8 group sessions (N/R) *O'Daniel et al [32] x 159 8 group sessions (N/R) Terry et al [33] x N/R 2-year project Pulver et al [34] x 53 One-time engagement (N/R) Arturi [35] x x N/R N/R Baart and Abma [36] x x 16 1-year project Boon and Broekgaarden [37] x x N/R N/R Van Olphen et al [38] x x x 9 N/R Haddow et al [39] x x x N/R N/R Riter and Weiss [40] x x x x x 12+ N/R Mollan et al [42] x x x x 122 18-month project Costello and Dorris [43] x x x x 41 Attendance at a conference and a workshop (N/R) Davies et al [45] x N/R Attendance at three workshops and completion of a survey (N/ R) Taruscio et al [46] x x 3 Governing Board member (3 years) Moore et al [47] x x 4 Attendance at four meetings (6 h) Mahler and Besser [48] x N/R N/R Birch et al [49] x engagement'. Ideally, ...…”

Designing a Web-Based Psychological Intervention for Patients With Myocardial Infarction With Nonobstructive Coronary Arteries: User-Centered Design Approach (Preprint)

“…Similar studies that have used PPI in intervention development have established beneficial impacts on the relevancy and acceptability of their interventions [42][43][44], and systemic reviews have also reported on the impact on study design and enhanced quality of research in general [45,46]. The outcome of our collaboration with 7 research partners enabled us to fulfill this aspect of PPI, hopefully producing an intervention better suited to the needs of the target user and that fulfilled the requirements shown in Textbox 1.…”

Evaluation of a patient and public involvement training programme for researchers at a large biomedical research centre in the UK

“…2 A training programme alone will not achieve that, particularly given the organisational complexity of major NHS–University partnerships that have BRCs and the consequent power dynamics that prevail within these institutions. 12 28 At the UCLH BRC, the training programme sits within a wider context in which many other PPI and engagement activities are resourced and pursued. The UCLH BRC has a dedicated, experienced and accessible team of staff who coordinate our activities in PPI and engagement and provide support and mentorship for researchers.…”

“… 11 There are considerable challenges of establishing meaningful PPI in hierarchical, scientific research organisational settings. 12 …”