Innovating public engagement and patient involvement through strategic collaboration and practice

Abstract

Background Patient and public involvement and engagement is an important and expected component of health-related research activity in the UK. Specifically within the health research sphere, public engagement (usually defined as raising awareness of research) and patient involvement (usually defined as actively involving people in research) have traditionally been seen as separate but have much to gain from working together towards a common goal of better health outcomes for all. Methods This paper describes a unique approach taken by the Public Programmes Team: a small interdisciplinary team of public engagement specialists, with backgrounds in science, community development, public engagement and involvement, policy, ethics, communications, industry, museums and creative practice, embedded within translational research infrastructure and delivery in Manchester in the North West of England. We propose a new model of professional practice – a 'cycle' of engagement and involvement – innovating across the complementary fields of public engagement and patient involvement, and working inclusively and in partnership with people in health research. Further, our approach capitalises on strategic collaboration offering economies of scale and a joined up way of working. Our ambition is to boldly experiment, learn and reflect, responsibly and based on evidence and partnerships, using methods of engagement that address issues of social justice. Results Here, we report on preliminary case studies exemplifying the impact of our approach, and data relating to achievements and learning between April 2017 and March 2018. Informed by our findings, we propose that our approach has the potential to be replicated elsewhere. Conclusions Our practice and the beginning of its evaluation lead us to believe that our way of working and model of professional practice – the ‘cycle’ of engagement and involvement – is effective in: addressing our vision of making health research relevant and inclusive for everyone; and embedding and joining up public involvement in a busy and fertile translational health research ecosystem.

Improving Patient Involvement in the Lifecycle of Medicines: Insights From the EUPATI BE Survey

“…In May 2019, the King Baudouin Foundation organized a symposium "Mind the Gap" on how different stakeholders can collaborate to set research priorities (6), exemplified by the UK-based James Lind Alliance (http:// www.jla.nihr.ac.uk/). Indeed, our findings confirm that, despite many topdown and bottom-up efforts (7,8), true patient involvement remains challenging.…”

“We are not Hard to Reach, but we may find it Hard to Trust”…. Involving and Engaging ‘Seldom Listened to’ Community Voices in Clinical Translational Health Research: A Social Innovation Approach.

“…Getting 'hands-on' including through creative activities and, for example, mock 'patient panel' exercises really helped to bring to life both the Sandpit environment and the reality of what public involvement can 'look like'. In line with our published approach[17] creative approaches triggered discussion and debate which led to rich and meaningful dialogue. Having presentations about health and research contexts related to GM and to the community organizations present, also helped to make the context of the Sandpit relevant.…”

“…We acknowledge the differences and complementarities between participation, engagement and involvement in health research [17]. Based on some of the existing literature (above) and our collective experience of engaging and involving diverse audiences with scienti c research since 2003, barriers to inclusion of diverse communities in health research can cut across participation, engagement and involvement and are summarized in Table 1.…”

“…We have previously reported on our strategic approach to working across public engagement and involvement, [17,27] which includes a focus on diversifying the audiences and producers of public involvement and effecting a shift from 'research led' engagement, involvement and research to 'community-led' engagement, involvement and research. Here we report on the methodology and impact of the sandpit, and suggest it as a replicable way to work with communities in public engagement and involvement to ultimately foster inclusive research.…”

Patient-partner engagement at the Centre de recherche du CHUS in the Province of Québec, Canada: from an intuitive methodology to outreach after three years of implementation

“…Of these few initiatives, the PACER initiative, two patient advisory councils in Canada (Newfoundland/Labrador and Alberta [ 34 ], the Can-SOLVE CKD Research Operations Committee [ 35 ]. Manchester/England Public Programmes Team [ 36 ] must be mentioned as it proposes models of interdisciplinary public-practice oriented professionals to support public and patient engagement in health research. Although we agree with the authors that institutional leadership and the creation of a robust infrastructure are mandatory to secure long-term participation of patients in research, we strongly support that a “bottom-up” approach with patients in the driver seat of this initiative as key to a successful and sustainable achievement.…”