Penny Brohn UK

Help change life with cancer. For good

Community of Interest Workshop

On 26th April 2016, we invited representatives from our community of interest to Bristol to kick-start the community with a workshop at Penny Brohn UK’s National Centre.

One of the most exciting opportunities arising from our role as a local partner site for Realising the Value, is the task to lead a community of interest around self-management education. It is also a huge challenge, as there is an impressive body of work currently being carried out in this focus area from academic and service delivery perspectives. Surrounding this work, there is also a growing body of evidence to support the difference that self-management interventions can make in people’s lives.

From our perspective as an organisation, the ability to bring in knowledge and expertise from a community of interest gives us a fantastic opportunity to develop and refine our own approach. Our community grew from the charity’s own networks, built up over a number of years, before spreading outwards to encompass new contacts via Realising the Value. It was important to us to create a diverse community made up of service providers working across a range of long-term conditions, academics, and service users. We were incredibly humbled by the positive response, much of which was due to the robust network created by our Research and Evaluation team, as well as the positive buzz around Realising the Value itself.

From the outset it was important to us as an organisation to be able to bring the community together face-to-face, despite the fact that members are spread throughout the country. We invited representatives to Bristol to kick-start the community with a workshop on Tuesday 26th April. Drawing on the resources of our National Centre, we were able to host 10 guests from Yorkshire, Merseyside, London and Brighton on the Monday night prior. We welcomed a further 9 guests on the day, adding up to a really fascinating mix of expertise and experience.

Michael Connors, Director of Services, began the day with a welcome and Introduction to Penny Brohn UK, and the Realising the Value project. Clare Greatorex, Education Manager, provided further insight into our approach by highlighting our work with Genesis Care. The spotlight was then on our community representatives, with the challenge to introduce themselves and their work around self-management in 100-second pitches to the group.

One of the most fascinating aspects of the workshop arose out of a group exercise to ‘define self-management education.’ With the breadth of experience in the room, some challenging, innovative definitions were put forward for discussion.

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Delegates presenting feedback on their definitions of self-management education

Just prior to lunch, the workshop moved into looking at the evaluation of self-management education. Dr Helen Seers, Research and Evaluation Lead at Penny Brohn UK, delivered a data presentation on the evidence behind our Living Well Programme and the Bristol Whole Life Approach. This was followed by Dr Marie Polley, University of Westminster, presenting evaluation evidence from the Cullompton Diabetes Self-management project.

Our guests were then invited to recharge and network over one of our fabulous Penny Brohn lunches, followed by a tour of the National Centre. Those that were keen to experience a little of our offering to clients, took part in a nature walk.

The afternoon was spent looking at ways in which the community would work together moving forward – both in practical terms and aspirations for the future of the group. Given the expertise in the room, there was a real desire to work together to support the future of self-management education by creating tangible, realistic outputs to drive change around the ‘knotty issues. These include involving hard to reach groups, funding challenges, and economic impact and cost savings analysis.

We are immensely grateful to each of our community members who took the time to attend the workshop and contribute to the rich discussion. Moving forward, we look forward to sharing the outputs of this community with our fellow partner sites, the Realising the Value consortium, and those interested in the future development of self-management education.

Anna Greaves

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