James Lind Alliance: Reflecting on nearly 6 years of Priority Setting Partnerships
2012 Conference
Abstract:
The James Lind Alliance, an initiative funded by NIHR based on the innovative idea of Sir Iain Chalmers, Dr John Scadding and Sir Nick Partridge is shortly to be “mainstreamed” within NETSCC. This session aims to share, in a very practical way, how the process has been developed and used by four different partnerships of Patients and Clinicians, as they prioritised research uncertainties that they agree should have research funding.
Chaired by Simon Denegri, Chair, INVOLVE
Contributors: Lester Firkins, Katherine Cowan and Sally Crowe, James Lind Alliance, Alex Pollock, Life after Stroke PSP, Emma Malcolm, Prostate Cancer PSP, Richard Morley, Pressure Ulcer PSP, and Tessa Clark and Amanda Roberts, Eczema PSP
Introduction to the session – Simon Denegri
Why did the JLA begin? – Lester Firkins
What is a Priority Setting Partnership? – Sally Crowe: an overview of the JLA model and approach to research priority setting, what difference does the patient/public voice make in priority setting?
How does priority setting work? Experiences of PSPs: Alex Pollock, Emma Malcolm, Richard Morley, Tessa Clark and Amanda Roberts
Going the extra mile – Alex Pollock: reaching out to survivors of stroke for their research questions – Life after stroke PSP
The wonders of Twitter – Richard Morley: using new media for gathering and prioritising research questions from professionals and the public – Pressure Ulcer PSP
Turning an uncertainty into a research question – Tessa Clarke and Amanda Roberts: experience of people with eczema, carers, health professionals and researchers crafting research questions from eczema research priorities – Eczema PSP
The final stretch – Emma Malcolm: getting prostate JLA cancer research priorities
funded – Prostate Cancer PSP
Open discussion session
What next for the James Lind Alliance? Katherine Cowan: transition to NETSCC, guidebook, future PSPs – thanks to all partners over the years
Tackling treatment uncertainties together (Patients and Clinicians)
Authors
Clarke ~ Tessa
Senior Clinical Trials Development Manager, UK Dermatology Clinical Trials Network
View all articles by this authorCowan ~ Katherine
Senior Adviser, James Lind Alliance. Katherine Cowan Consulting Limited.
View all articles by this authorCrowe ~ Sally
Chair, Monitoring and Implementation Group, James Lind Alliance. Sally Crowe originally trained as a nurse, and then re-trained in public health, with a particular interest in patient and public involvement in research and service delivery. She chairs the Monitoring and Implementation group of the James Lind Alliance, a national initiative that aims to tackle treatment uncertainties in health care, www.lindalliance.org. She is also a Director of Crowe Associates Ltd, which provides consultancy, training and project management for patient and public involvement in health and social care research.
View all articles by this authorDenegri ~ Simon
Simon Denegri is Chair of INVOLVE and the NIHR National Director for Public Participation and Engagement in Research. He was Chief Executive Officer at the Association of Medical Research Charities (AMRC) from 2006 until 2011. His background is in public affairs and communications having worked for a number of charitable, public and private sector organisations since the early nineties. These include the Royal College of Physicians, Procter & Gamble and the Alzheimer's Society.
View all articles by this authorFirkins ~ Lester
Chair, Strategy and Development Group, James Lind Alliance
View all articles by this authorMorley ~ Richard
Project Officer, University of York. Richard is co-chair of the Health Sciences Patient and Public Involvement (PPI) Committee, works on the James Lind Alliance Pressure Ulcer Partnership and is a James Lind Alliance Adviser. He previously helped establish the innovative East Midlands School for Social Entrepreneurs and a network of Independent Equalities Advisory Groups in Nottinghamshire.
View all articles by this authorPollock ~ Alex
Alex Pollock is a Senior Research Fellow, working on a programme of research relating to stroke, at the Nursing, Midwifery and Allied Health Professions (NMAHP) Research Unit at Glasgow Caledonian University. Alex has been involved in Cochrane systematic reviews for over 15 years, and is a member of the Editorial Group for the Cochrane Stroke Group.
View all articles by this authorRoberts ~ Amanda
Public Member, Patient and Public Involvement Reference Group, National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre (NETSCC).
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