Patients, carers and clinicians have highlighted continence issues as being important across James Lind Alliance Priority Setting Partnerships (PSPs) in Parkinson’s, Palliative and end of life care, Inflammatory Bowel Disease, Dementia and MS.
The Digital Technology for Mental Health JLA PSP used a variety of methods to gather uncertainties from all the types of people it thought it was important to hear from. The PSP realised that using an online survey would not suit everyone.
The charity Autistica completed its PSP looking at research priorities from all those who know and understand Autism in May 2016. Since then, Autistica has set about funding researchers in the UK to help provide some answers to the questions that people who responded to the PSP thought were most important.
When we set out to find the top 10 priorities for Type 2 diabetes research, we wanted to make sure they represented everyone affected by the condition. In particular, people from Black, Asian and minority ethnic (BAME) communities, who are two to four times more likely to develop the condition.
The first JLA PSP to announce its Top 10 priorities for future research was in Asthma in March 2007. One of the questions that patients, carers and health professionals jointly agreed that they wanted future research to tell us more about was “What are the benefits of breathing exercises as a form of physical therapy for asthma?”
The Type 2 Diabetes Priority Setting Partnership (T2D PSP) has just announced its top 10 priorities. With input from over 4000 people who submitted over 8000 ideas for research, this has been one of the JLA’s larger PSPs. As their involvement on the project comes to an end, Steering Group members reflect on the experience from their individual perspectives.
Douglas Findlay, Steering Group member, Emergency Medicine Priority Setting Partnership, looks back over the course of the priority setting process he was a part of. He explains why he believes the work of the James Lind Alliance is so valuable, and why he would encourage others to get involved.
It’s important that Priority Setting Partnerships (PSPs) think about the people they are trying to talk to and how to make it as easy as possible for them to get involved. The Canadian Dementia PSP has announced its Top 10 recently and made some interesting adjustments to help people with a diagnosis of dementia to join in with the priority setting.
Emily Burns, Research Communications Manager at Diabetes UK, reflects on her experience as a participant in the Contraception PSP Final Workshop. Emily describes the process, and relates this to her work with the Type 2 Diabetes PSP, which is currently planning its own final workshop.