The James Lind Alliance

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The James Lind Alliance

• The Patients and
• Patients Charities perspective

Lester Firkins JLA Jenny Versnel Asthma UK
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James Lind Alliance

• A non-profit making initiative funded by MRC and
  DH
• To bring Patients and Clinicians together in
  Partnership to identify and prioritise the most
  important unanswered questions
• To give funders of health research an awareness
  of what matters most to patients and clinicians
• Asthma is the first Working Partnership

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Aims of this Presentation

• To share the views of two people representing
  patients involved with the JLA
• To consider the challenges the JLA face
• To stimulate discussion - and seek views and
  guidance on next steps

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The Asthma story so far ..

• Asthma UK and the British Thoracic Society
  expressed keen interest in the JLA concept and
  volunteered to be the pilot
• Several meetings and many conversations ahead of
  - the full priority setting meeting to be held in
  Spring 2006
• Many issues and challenges identified and
  confronted

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Who are we?

• Lester Firkins
• 35 Years a Career Banker
• Lost eldest child to a rare disease (vCJD)
• Co-Chair of an MRC Clinical Trial
• Member of INVOLVE
• Member of the JLA Steering Committee
• Continually surprised at how things are not done
  - Patients views are not routinely sought to
  determine research priorities

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Who are we?

• Jenny Versnel
• Assistant Director, Research at Asthma UK
• Scientific background
• Moved from the laboratory to a charity 10 years
  ago
• Strongly believes that the scientific community
  can learn from the experiences of patients
• Combining clinical expertise with the experiences
  of patients helps to focus the direction of
  research and make it more applicable to those
  with conditions

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What we mean by Patient

• Noun
• A person receiving or registered to receive
  medical treatment
• As opposed to the Adjective
• Able to wait without becoming annoyed or anxious
• Slow to lose ones temper with irritating people
  or situations

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The challenges for the JLA

• Patients and Clinicians should work together to
  agree which uncertainties matter most and thus
  deserve priority attention
• Who is empowered to speak for Patients at these
  meetings?
• What rights does anyone (individually or in a
  group) have to speak on behalf of patients
• Is true representation possible
• The action of speaking or acting on behalf of an
  individual or a group

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The JLA Goal

• The JLA process leads to two groups, in a room,
  working together to prioritise unanswered
  uncertainties which should be researched.
• How can this be achieved?
• - The breadth of the challenge
• - How do we get acceptable representation?
• Perhaps the best that can be achieved is to
  ensure that the widest Patient perspective is
  represented

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The breadth of our challenge

• Asthma
• 5.2 million people with asthma
• Differing levels of severity and thus different
  needs
• A condition that does not discriminate on race,
  gender or age
• Main charity representing people with asthma but
  impossible to speak on behalf of everyone with
  asthma

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How should the JLA act?

• Intuitively all the Affiliates would want the JLA
  to do the right thing
• For it to succeed and excel the JLA must develop
  a reputation - and therefore manage any potential
  Reputational Risk
• Minimize the criticism the wrong people have
  been involved
• Demonstrate that the prioritised uncertainties
  are seen as the most important by the widest
  practically achievable group of patients.

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The way forwardSupport and Challenge

• Develop a way of working with prospective Patient
  Groups to ensure, as far as possible, a robust
  breadth of perspective
• A series of questions to explore critical areas
• Not an interrogation - the JLA has no right to
  impose its views and opinions on others
• However, should the JLA have minimum expectations
  for the process to succeed?

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1. What are the aspirations of your Organisation?

• Does the primary purpose of the Organisation fit
  with the goals of the JLA?

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2. How is your Board elected?

• What voice does the membership have in the
  people who lead and speak for the Organisation?

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3. How are you funded?

• Is there any chance that sources of funding may
  give rise to undue influence on the
  Organisations contribution to the prioritisation
  process?

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4. Are there other support groups?

• What do they do that is different?
• How do you work together?
• Should JLA involve them through yourselves?
• Are they likely to be critical of your sole
  involvement?
• How can that risk be managed?

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5. How do you communicate with members?

• What processes do you have for
• Communicating with them
• Seeking their views on research matters

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6. How would you involve them?

• How will you take this challenge to them?
• Would a specific communication exercise be
  appropriate to help clarify and capture their
  perspective?
• Questionnaire
• Focus Groups
• Meetings

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7. Do you have a list of research priorities?

• This would give evidence of active interest in
  this area
• This would demonstrate active involvement with
  patients
• If affirmative, would give an excellent start to
  the JLA process if negative it doesnt preclude
  involvement

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How does that feel?

• This list of questions may feel intrusive - but
  what is the alternative?
• Does the JLA have the right to ask these
  questions?
• Is there a risk that the JLA may seem to be
  criticising, by implication, Patient Groups?
• Would there ever be a situation where the JLA
  should say Sorry - we cannot / are not prepared
  to, help

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The way forward

• Working with Asthma UK has undoubtedly helped the
  JLA raise its game
• Is it possible that, in considering these
  questions and challenges, the JLA will help
  Patient Groups raise their game?
• Is this the right way to proceed?