In November 2014, Julie Bounford and Elspeth Mathie (left) from the CLAHRC East of England PPI Theme (along with Julia Keenan, Valerie Dunn and Simon Horton) attended the national INVOLVE conference in Birmingham for people interested in public involvement in NHS, public health and social care research. With different professional backgrounds in engagement and involvement with research respectively, Julie and Elspeth reflect on the conference and the contribution that both engagement and involvement can make to PPI. They conclude that we have many tools in the box to help us achieve our ultimate aim – the highest possible standard of patient and public involvement in research.
What, in practical terms, is the difference between engagement and involvement?
- Angela Martin (the National Institute for Social Care and Health Research in the Welsh Government) talked about an ambitious culture change programme aimed at putting the citizens of Wales at the heart of creating new knowledge, which meant informing the public about research. Angela said that public engagement, which includes a facilitated dialogue between the public and researchers, would enable greater public understanding of research, to become empowered and enabled to become involved in research.
The tools that we have at our disposal are many and varied, tangible and intangible. They include people, principles, ideas, activities, guides, networks and funding. Make sure you have all the tools you need and have them in reach for when you need them – know where they are or at least where you may find them!
INVOLVE makes the distinction between involvement (where members of the public are actively involved in research projects and in research organisations), participation (where people take part in a research study) and engagement (where information and knowledge about research is provided and disseminated). The National Coordinating Centre for Public Engagement defines public engagement as describes the myriad of ways in which the activity and benefits of research can be shared with the public. They say it is by definition a two-way process, involving interaction and listening, with the goal of generating mutual benefit.
- Dr Hamilton (Director of Research and Development at the Department of Health) in his opening keynote presentation, referred to both ‘patient and public involvement’ and to ‘public engagement’. A delegate then expressed concern that increased use of participation and engagement in health and social care research might lead to a loss of genuine public involvement.
- Simon Denegri (Chair of INVOLVE), in his keynote about the Breaking Boundaries Review, talked about the ‘frenzy’ of activity in recent years that allowed many flowers to bloom. He said what we need now is the right approach to pruning, planting and husbandry to allow the garden to flourish. He acknowledged how we grow strongly through the differences between involvement, engagement and participation. He considered involvement as fundamental to making everything else work and wondered if we were beginning to drift away from ‘our anchor’ (his view) of involvement, which was a core principle.
Choose the right tool for the task. Use them together or in sequence. Choosing the right one can be tricky when there are so many. Look at things differently and you will be amazed by the results!
- Diane Munday (PPI Representative from the Centre for Research in Primary and Community Care, University of Hertfordshire and also involved in the RAPPORT study of PPI in health research) said you can look at something from a personal and consumer point of view, and it doesn’t corrupt your vision. It could in fact, do the opposite. In the RAPPORT study, Diane was invited to make her own coding system for analysing the data. Her analysis was then compared with that carried out by the researchers and they found the results coincided, adding validity to the research findings (find more on this study here.)
Look after your tools and they will serve you well!
- Sophie Staniszewska (Royal College of Nursing Research Institute, Warwick Medical School) in her presentation with Julia Keenan (University of East Anglia and CLAHRC East of England) on the importance of relationships in PPI (based on the findings from the national RAPPORT study) stated that resources should be dedicated for time and money in building and sustaining relationships. She reflected on the culture of research in academia where relationships currently receive less attention than methods and methodology. Mutual understanding, acknowledgement and trust take time to develop.
The PPI Theme at the CLAHRC East of England aims to help equip the PPI toolbox by putting effective PPI systems into place, building relevant PPI partnerships and developing capacity.
Links to useful resources:
- INVOLVE Guidance on the use of social media
- In June 2014 the BMJ announced a new strategy to promote patient partnership and in 2015 the BMJ is launching a new open access journal called, ‘Research, Involvement and Engagement’ on patient involvement.
- National Coordinating Centre for Public Engagement