The James Lind Alliance Tackling treatment uncertainties together

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The James Lind AllianceTackling treatment
uncertainties together

• Lester Firkins, John Scadding and Mark Fenton
• INVOLVE Conference 2006

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James Lind Alliance

• WHO?Are they
• WHAT?..Do they do
• HOW?.Do they do it
• WHEN?..Will they do it
• WHY?.BOTHER

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WHO?

• Convened in 2004 by
• James Lind Library
• INVOLVE
• Royal Society of Medicine
• Secretariat funded by DH and MRC
• ( 6 part-time doers an excellent overview
  committee and 100 Affiliates)

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WHAT?

• To increase the focus of the therapeutic research
  agenda on questions and priorities shared by
  patients and clinicians.
• To promote working partnerships and
  collaborations between patients and clinicians to
  identify and promote their shared priorities for
  therapeutic research.
• To increase general awareness and understanding
  of the need to refocus the therapeutic research
  agenda.

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WHY.. BOTHER?

• What influences Research at the moment?
• Over to you.
• Let us know what you think currently influences
  priorities in research

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HOW?

• Address the questions of uncertainties, in any
  given area, by assembling the unanswered
  questions from a variety of sources.
• Work with and support Working Partnerships of
  patient groups and clinician groups to identify
  to prioritize these unanswered questions about
  the effects of treatments

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ADVANTAGES of WORKING PARTNERSHIPS

• Address issues of importance relevance to
  patients recognise mismatches in therapeutic
  research.
• Patients clinicians set priorities for
  research, not industry.
• Working together minimises biases of individuals.
• Involvement of patients in setting research
  agenda better recruitment to trials and
  understanding of trial methods (RCT).
• Identification of under-researched but important
  treatments.

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ADVANTAGES of WORKING PARTNERSHIPS

• Identification of systematic reviews needed.
• Potentially, easier passage of research proposals
  through ethics committees.
• Prospect of attraction of non-commercial funding.
• Ensure the most relevant trials are conducted
  new vs best existing treatment.
• Ensure trials of existing treatments for
  indication switches.
• Greater involvement of NHS clinicians in
  therapeutic research.
• More research done as part of routine NHS
  healthcare.

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HOW?

• WPs patients ( and/or advocates) and clinicians.
• Organisations representing patients and
  clinicians
• advantages representative, potentially better
  balance.
• authoritative, higher external profile.
• disadvantages difficulty establishing agreed
  views within large organisations.
• lack of clearly defined responsibility.
• repeated referral back to organisation for
  approval.
• Success of non-organisation based methods, eg RA.

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CHALLENGES

• Ability to work together skills needed to reach
  consensus decisions .
• Ensure clinicians and patients in WPs are
  representative of the condition.
• Set aside personal (and institutional) agendas.
• Clinicians must accept need to work to patient
  defined outcomes and preferred interventions to
  be investigated.
• Work must be done within NHS framework research
  becomes a part of routine care, with need to
  engage HNS managers and funders.
• Obtaining funding for trials prioritised by WPs.

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Identifying patients and clinicians questions
about the effects of treatments

• Mark Fenton
• Database of Uncertainties about
• the Effects of Treatments (DUETs)
• and Secretariat, James Lind Initiative

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HOW?

• Address the questions of uncertainties, in any
  given area, by assembling the unanswered
  questions from a variety of sources.

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Challenges Identifying outcomes that matter
to patients Harvesting patients and
clinicians unanswered questions about the
effects of treatments
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Identifying outcomes that matter to patients

• Everything works!
• If you use outcomes that a patient or clinician
  wouldnt recognise
• What do you want treatments to do?
• what should researchers measure
• how should they decide on the question to answer?

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Identifying outcomes that matter to patients

• Do automated/mechanical chest compression devices
  improve survival in adult out-of-hospital cardiac
  arrest?
• Outcome Mortality No difference
• Outcome Survival a non statistically
  significant increase of 40 in the "risk" of
  surviving

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Identifying outcomes that matter to patients
Rapid tranquillisation of violent or agitated
patients in a psychiatric emergency setting.
Pragmatic randomised trial of intramuscular
lorazepam v. haloperidol plus promethazine.
Alexander J, Tharyan P, Adams C, John T, Mol C,
Philip J. British Journal of Psychiatry. 2004
Jul18563-9
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Identifying outcomes that matter to patients

• .. carers said they wanted to see their
  relatives quiet and not causing a problem in
  10-15 minutes. They were for the use of
  injections, if needed ( people respect
  injections, sometimes inappropriately, in these
  parts). Most were not for the use of restraints,
  unless absolutely necessary. The patients
  themselves were grateful that they were given
  treatments that got them better but their
  opinions were more mixed than the carers.

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DUETs working definition of uncertainty about
the effects of treatments

• No up-to-date systematic reviews exist
• OR
• Up-to-date systematic reviews show that
  uncertainty exists

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Harvesting questions for DUETs

• Sources of uncertainties about the effects of
  treatments
• Patients and carers
• Patient information/advice services
• (e.g. Asthma UK, NHS Direct, interviews)
• Clinicians
• Clinical question answering services
• (e.g. NLH's Primary Care Question Answering
  Service)
• Other sources (e.g. BMJ Clinical Evidence)
• Systematic reviews, clinical guidelines, policy
  makers
• Registers of ongoing research

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To visit DUETs go towww.duets.nhs.uk
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Long Term Goals

• Better quality and relevant research
• Informal Network of Working Partnerships who
  support each other
• Funding is attracted to those propositions that
  carry a Consumer / Clinician badge
• It becomes the way we do things round here

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W.I.F.M.

• The JLA is just one vehicle where real people
  with personal experiences can add value, by
  working with clinician groups.
• It may seem more hard work to involve the
  public but the JLA is convinced that it is the
  preferable way
• And for you
• Confidence that you are spending time on the
  right things to change peoples lives
• Ability to put faces to conditions - its always
  personal
• Huge support and encouragement
• Easier route through governance
• Funding

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Over to you

• James Lind Alliance
• www.lindalliance.org
• 01865 517635
• Summertown Pavillion
• Middle Way, Oxford
• OX2 7LG