What makes it work? Exploring experiences of patient research partners and researchers involved in a long-term co-creative research collaboration

Emma Hovén; Lars Eriksson; Åsa Månsson D'Souza; Johanna Sörensen; David Hill; Carolin Viklund; Lena Wettergren; Claudia Lampic

doi:10.1186/s40900-020-00207-4

What makes it work? Exploring experiences of patient research partners and researchers involved in a long-term co-creative research collaboration

Res Involv Engagem. 2020 Jun 19:6:33. doi: 10.1186/s40900-020-00207-4. eCollection 2020.

Authors

Emma Hovén¹, Lars Eriksson^{2

3

4}, Åsa Månsson D'Souza⁵, Johanna Sörensen⁵, David Hill⁵, Carolin Viklund⁵, Lena Wettergren^#¹, Claudia Lampic^#^{1

6}

Affiliations

¹ Department of Women's and Children's Health, Karolinska Institutet, SE-171 77 Stockholm, Sweden.
² Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, SE-171 77 Stockholm, Sweden.
³ School of Health Sciences, City, University of London, London, EC1V 0HB UK.
⁴ Department of Infectious Diseases, Karolinska University Hospital, SE-141 86 Huddinge, Sweden.
⁵ Patient research partner, Stockholm, Sweden.
⁶ Department of Public Health and Caring Sciences, Uppsala University, BMC, Husargatan 3, SE-751 22 Uppsala, Sweden.

^# Contributed equally.

Abstract

Background: Exchanging experiences of patient and public involvement (PPI) can bring insights into why, how and when PPI is most effective. The aim of this study was to explore the experiences of patient research partners (PRPs) and researchers engaged in a co-creative long-term collaboration in cancer research.

Methods: The aim and procedures of this study were jointly decided upon by PRPs and researchers. The PRPs included former patients treated for cancer and significant others of the same target group. The participants (11 PRPs, 6 researchers) took part in semi-structured telephone interviews. The interviews were analysed using qualitative content analysis by a researcher who had no prior relationships with the participants.

Results: Five overarching categories were identified: Reasons for investing in a long-term collaboration, Benefits of participating, Improving the research, Elements of success and Challenges and ways to improve. Reasons for investing in the collaboration included the desire to improve cancer care and to make use of own negative experiences. Benefits of participating included a positive impact on the PRPs' psychosocial adjustment to the illness. Moreover, the researchers highlighted that working together with the PRPs made the research feel more meaningful. The participants reported that the collaboration improved the relevance and acceptability of the research. Having a shared goal, a clear but yet accommodating structure, as well as an open and trustful working atmosphere were recognised as elements of success. The PRPs furthermore emphasized the importance of seeing that their input mattered. Among the few challenges raised were the distance to the meeting venues for some PRPs and a limited diversity among participants.

Conclusions: This study identified factors essential to researchers and clinicians attempting to engage the public in research. Our results suggest that for successful patient involvement, the purpose and format of the collaboration should be clear to both PRPs and researchers. A clear but yet accommodating structure and keen leadership emerged as key factors to create a sense of stability and a trustful atmosphere. Furthermore, providing regular feedback on how PRPs input is implemented is important for PRPs to stay committed over time.

Keywords: Cancer research; Co-creative long-term collaboration; Patient and public involvement; Patient research partners.