Epilepsy charities collaborate in vital new partnership to prioritize research

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Epilepsy Research UK today announced the launch of a James Lind Alliance (JLA) Priority Setting Partnership (PSP) to set future priorities for epilepsy research.

The PSP will bring together clinicians, patient groups and people affected by epilepsy to identify and prioritize areas of health care that can be improved by research. Epilepsy Action, Young Epilepsy, SUDEP Action, Epilepsy Society and Epilepsy Research UK will work together to oversee this important investigation into the priorities of people with epilepsy.

What is the James Lind Alliance Priority Setting Partnership?

The JLA is a non-profit initiative, created in 2004. It brings together patients, caregivers and clinicians in PSPs. These PSPs identify and prioritize the uncertainties associated with the evidence, or “unanswered questions”, which they believe are most important for research in their field. Traditionally, PSPs have focused on uncertainties about the effects of treatments, but some PSPs have chosen to broaden their scope beyond that. The goal of a PSP is to help ensure that those who fund health research are aware of what really matters to patients, caregivers and clinicians. The National Institute for Health Research (NIHR – www.nihr.ac.uk) coordinates the JLA infrastructure to oversee processes for PSPs, based at the Center for Assessment, Testing and Studies Coordination from NIHR (NETSCC), University of Southampton.

What is the JLA PSP process?

The rigorous JLA PSP process reveals the top 10 research questions for a given condition. This shortlist highlights areas that are important to those concerned, but does not necessarily raise specific research questions. The Top 10 may include broader areas of interest where patients, caregivers, and healthcare professionals have agreed that there is a need for research. Researchers and funders can then prioritize the most meaningful research for those who will benefit the most.

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