An introduction to the JLA. What will I cover? What is the James Lind Alliance (JLA)? What do we do? How do we do it? What difference does it make?

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Presentation transcript:

An introduction to the JLA

What will I cover? What is the James Lind Alliance (JLA)? What do we do? How do we do it? What difference does it make?

What is the James Lind Alliance? A small initiative – four part-timers Funded by the National Institute for Health Research Established in 2004

What is the James Lind Alliance? Tackling treatment uncertainties together Finding out what research is important to: Patients / service users Carers Clinicians / healthcare professionals

What is the James Lind Alliance? Why patients, carers and clinicians?

What do we do? Priority Setting Partnerships Patients, carers and clinicians Focusing on single conditions Identifying uncertainties about treatments Prioritising the ones they think are most important for research to address A top 10

What do we do? Completed PartnershipsCurrent Partnerships Asthma Urinary incontinence Vitiligo Prostate cancer Schizophrenia Type 1 diabetes ENT aspects of balance Stroke Eczema Cleft lip and palate Dementia Head and neck cancer Lyme disease Pressure ulcers Pre-term birth Sight loss and vision Tinnitus

How do we do it? The priority setting process: Set up steering group Invite partners Gather uncertainties Prioritise uncertainties Promote priorities to researchers and funders

How do we do it? Set up steering group Patient, carer and clinician representatives Resources and expertise Protocol

How do we do it? Invite partners Patients, carers, clinicians and their representatives Declaration of interests Affiliation Exclusions

How do we do it? Gather uncertainties no up-to-date, reliable systematic reviews of research evidence addressing the uncertainty about the effects of treatment exists up-to-date systematic reviews of research evidence show that uncertainty exists

How do we do it? Gather uncertainties Survey Research recommendations UK Database of Uncertainties about the Effects of Treatments (UK DUETs)

How do we do it? Prioritise uncertainties – step 1 (interim stage) From a long list to a short list Top 10 uncertainties chosen by partners

How do we do it? Prioritise uncertainties – step 2 (final) Priority setting workshop Patients, carers and clinicians A day of democratic discussion and ranking Prioritise the remaining uncertainties Agree the top 10

How do we do it? Promote priorities to researchers and funders NIHR Health Technology Assessment programme Dissemination of findings

What difference does it make? Asthma Funding has been awarded to research to provide better evidence on the effects of breathing exercises for asthma.

What difference does it make? Urinary Incontinence Five related studies have been funded and several more are in development, addressing six of the top 10 priorities, with two combined.

What difference does it make? Vitiligo A pharmaceutical company is preparing to run a pilot multi-centre trial on number 6 of the top 10. The Centre of Evidence Based Dermatology is developing two research ideas from the top 10 into a trial protocol.

What difference does it make? Prostate cancer The prioritised list has informed the research funding strategies of Prostate Action and the Prostate Cancer Charity. Over 15 projects addressing the priorities have been funded since the workshop in October 2010.

Get involved! Contribute personal experience and professional expertise. Collaborate with different groups. Help to shape the research agenda.

For more information… – become an Affiliate – practical guidance Thank you!