100 JLA PSPs: How have charities benefitted from being involved?

We are delighted that in 2020 the James Lind Alliance (JLA) has reached the milestone of 100 completed Priority Setting Partnerships (PSPs). The JLA has been privileged to support many charities working with their communities in identifying and agreeing priorities for research.

We know that PSPs have an impact on research that is funded, helping to ensure that it is of real, practical value to patients, carers and healthcare professionals. But charities have benefitted in other ways too, for example, a PSP has helped to raise their profile and credibility and led to more collaborations, more patient and public involvement, and an increase in the profile of their healthcare area.

It’s rewarding to see how JLA PSPs have supported collaboration activity. The Sight Loss and Vision JLA PSP brought together over 40 organisations to share the PSP survey.

Michele Acton, CEO of Fight for Sight at the time, believes the experience had a huge impact on the organisation by promoting a culture of working in partnership with other related charities:

“Last year Fight for Sight worked with 23 partner organisations, whereas before the PSP we partnered with two. The PSP helped to give all those organisations a shared agenda, an output which the whole sector could use, and it helped build trust between the organisations.”

Charities have also benefitted from greater collaboration with the research community. As a result of taking part in the Multiple Sclerosis JLA PSP, the MS Society has changed the way it works with researchers, promoting greater collaboration amongst academics, as well as between the charity and the researchers they fund. Susan Kohlhaas, former Executive Director of Research at the MS Society explained:

“Originally, we had a traditional funder/researcher relationship - we give you a grant, you report against these milestones and we'll be in touch if anything goes wrong. The JLA made us think more about how we're going to work alongside other funders, academics and different institutions, to try and get things done.”

And we’re pleased to see that PSPs can support long-lasting networks of patients, carers and clinicians. Following the Autism JLA PSP, Autistica established its Discover Network, bringing the autistic community together with the goal of making research more authentic and impactful. James Cusack, CEO of Autistica, observed:

“The Network has brought the community closer together and ensured autistic people are not just involved in setting priorities, but also in the development of research ideas and the full research cycle. That wouldn’t have happened if we hadn’t done the JLA PSP first. We have since been partners on research applications, which is something that hadn’t happened in the past. It also ensures we follow a process for funding research which is most likely to be useful to people, because we’re focusing on what people want. For us that’s massive.”

You can read about all of the areas where JLA PSPs have worked to set research priorities on the JLA website. This short animated video tells you how a PSP works. If you'd like to get in touch with the team, please email us at jla@southampton.ac.uk.