By Suzannah Kinsella, JLA Adviser (left)
Helen West, from Guts UK
Anna Norton and Caoimhe Bennett, Epilepsy Research UK, and
Alice Robertson, AMRC
On 13 July 2022, the Association of Medical Research Charities (AMRC) held a member event called: ‘Ask an expert: Partnerships and Collaboration’. At a time when our news is dominated by political turmoil and war in Ukraine, this event was an opportunity to share experience and advice on how to do things better, together.
The AMRC invited the JLA to host a breakout discussion, alongside four other organisations: NIHR, the BioIndustry Association, the Association of the British Pharmaceutical Industry and the law firm Mills & Reeve.
Our task was to share our experiences of what makes partnership and collaboration flourish or flounder in a JLA Priority Setting Partnership.
In the spirit of doing things better together, I was joined by the AMRC’s Alice Robertson and two current JLA Priority Setting Partnership teams: Helen West from Guts UK, which is the charity running the Pancreatitis and Irritable Bowel Syndrome PSPs and Anna Norton and Caoimhe Bennett from Epilepsy Research UK, running the UK Epilepsy PSP.
Here we share one thing we thought most interesting from our small group discussions that day:
- Flexibility of involvement: some people find it very difficult to be involved in PSPs, such as attending monthly Steering Group meetings, but their experience is really important to the priority setting process. They may be people with life limiting conditions such as Motor Neurone Disease, or overworked GPs. Flexibility was flagged up as essential: if they can’t make it to every Steering Group meeting, could they contribute via catch up telephone calls or email?
Helen, Guts UK:
- Honest and meaningful starting conversations: planning who you would like to be involved in your PSP, what level of collaboration and support you are wanting to achieve from various organisations i.e. charities with similar conditions. Include members of your team to make initial contact, this can vary from your CEO, board of trustees to the co-ordinator of the PSP. Don’t underestimate the power these conversations can have or prejudge past history – good or bad.
Anna, Epilepsy Research UK:
- Establishing a Priority Setting Partnership – use of distinct branding: Epilepsy Research UK are spearheading and funding the UK Epilepsy Priority Setting Partnership (PSP), but this is a community endeavour: a collaborative project shared by national and regional charities, professional membership bodies and support groups dedicated to improving the lives of people with epilepsy and associated conditions across the UK. We found that our choice of branding for the PSP was an important tool when framing and communicating this community collaboration to the partners we worked with. Using colours and design distinct from our own branding and that of our partners emphasised the collaborative nature of the UK Epilepsy PSP and reflected two fundamental principles of the James Lind Alliance’s priority setting process: inclusivity and equal involvement.
Caoimhe, Epilepsy Research UK:
- Collaborator success – early involvement: Another essential step in ensuring collaboration in the UK Epilepsy PSP was establishing meaningful relationships with our collaborators and partners as early as possible. We achieved this through initial communication at Chief Executive level, and supported each organisation with promotional materials, enabling them to share the survey with their individual communities as easily as possible. Leading epilepsy charities had representation on the Steering Group and were involved in setting up the scope of the UK Epilepsy PSP. These were important steps in making this a community endeavour.
Alice Robertson, AMRC:
- Beyond the Top 10: a JLA PSP is well known for producing a final list of research priorities, but when joining the breakout discussions with charities going through a PSP, it became apparent how beneficial the process is for bringing charity funders together, fostering relationships and paving the way for collaborations too. I learnt that whilst JLA PSP principles can be applied on a smaller scale using a charity’s existing advisory groups of clinicians and people with lived experience, this does not realise the collaborative benefits of a PSP. However, where conducting a PSP is not an option, it was positive to hear that the JLA will still work in association with charities, offering advice and support on specific activities.
With many thanks from the JLA team to Helen, Anna, Caoimhe and Alice for their help