James Lind Alliance: An opportunity to set research priorities

Transcription

1 A partnership of and James Lind Alliance: An opportunity to set research priorities Mary McMurran

2 Aims To summarise the aims and processes of the James Lind Alliance To provide an example of JLA priorities To discuss whether a JLA for personality disorder treatment should be developed

3 Established in 2004 Need more direct engagement of patients and the wider public to determine the need for research to inform decisions about health care Brings patients, carers and clinicians together to identify and prioritise the top 10 uncertainties, or 'unanswered questions', about the effects of treatment Partnerships are co-ordinated by the National Institute for Health Research (NIHR) Evaluation, Trials and Studies Coordinating Centre (NETSCC).

4 Scottish physician Discovered that Citrus fruit cured scurvy in sailors in a fair test comparing cider sulphuric acid vinegar sea water citrus fruit, and a medicinal paste made up of garlic, mustard seed, dried radish root and gum myrrh. Cleanliness prevented typhus on board ships

5 P The key components of a priority setting process are: engaging with patients, carers and clinicians to participate in the Partnership collecting patients', carers' and clinicians' treatment uncertainties reviewing existing research recommendations to identify uncertainty working with patients, carers and clinicians to prioritise the uncertainties, and agreeing a ranked top 10 questions for research to address contributing to DUETS

6 P DUETS Database of Uncertainties about the Effects of Treatments

7 Multiple Sclerosis top Which treatments are effective to slow, stop or reverse the accumulation of disability associated with MS 2. How can MS be prevented? 3. Which treatments are effective for fatigue in people with MS? 4. How can people with MS be best supported to self-manage their condition? 5. Does early treatment with aggressive disease modifying drugs improve the prognosis for people with MS? 6. Is vitamin D supplementation an effective disease modifying treatment for MS? 7. Which treatments are effective to improve mobility for people with MS? 8. Which treatments are effective to improve cognition in people with MS? 9. Which treatments are effective for pain in people with MS? 10. Is physiotherapy effective in reducing disability in people with MS?

8 Schizophrenia top What is the best way to treat people with schizophrenia that is unresponsive to treatment? 2. What training is needed to recognize the early signs of recurrence? 3. Should there be compulsory community outpatient treatment for people with severe mental disorders? 4. How can sexual dysfunction due to antipsychotic-drug therapy be managed? 5. What are the benefits of supported employment for people with schizophrenia? 6. Do the adverse effects of antipsychotic drugs outweigh the benefits? 7. What are the benefits of hospital treatment compared with home care for psychotic episodes? 8. What are the clinical benefits and cost-effectiveness of monitoring the physical health of people with schizophrenia? 9. What are the clinical, social and economic outcomes of treatment by acute day hospitals, assertive outreach teams, in-patient units, and crisis resolution and home treatment teams? 10. What interventions could reduce weight gain in schizophrenia?

9 Steering group Co-ordinate the Priority Setting Partnership and organise its activities. Usually led by someone in an organisation with resources to offer to the process, such as funding, staff, time and expertise Write the Protocol The Steering Group must include representatives of patients and clinicians, which usually includes representatives from an umbrella group, such a charity or professional association JLA offers support, facilitation and guidance

10 Priority setting usually takes months Resources/Costs JLA Advisor time (estimated 6-9 days) = Patient/Clinician survey (estimated 6-17 days) = Central Admin (estimated approx. 3 days) = 192 Data Collection/Analyst (estimated approx. 30 days) = 6000 Final Priority Setting Meeting (including facilitators, workshop materials etc) = 1400 Underlying Admin (including teleconferences, meeting rooms, catering, travel, mailing lists etc) = 3500 Suggest 10% contingency = ,792-26,592

11 Funding No central funding Charities Mental Health Research UK Benefactors BIGSPD? Trusts?

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