Identifying uncertainties about the effects of treatments

Uncertainties about the effects of treatments must be assembled and categorized. Sources of uncertainties include:

• Patients, carers and clinicians.
• Research recommendations.
• Ongoing research.

A Database of Uncertainties about the Effects of Treatments (DUETs) is being assembled as a service to JLA Working Partnerships and others considering priorities for research, drawing on the above and other sources. The reasons for concluding that an uncertainty exists about the effects of a treatment are recorded in DUETs as part of a DUETs record.

Important uncertainties may be overlooked because of emphasis on chronic but not acute health problems; severe but not common health problems; and disease-specific but not cross-cutting issues (such as social support, improved surgery and anaesthesia, professional team building). Involvement of patients’ groups and patients when harvesting uncertainties for inclusion in DUETs and in preparation for prioritisation meetings of JLA Working Partnerships will help to ensure that such uncertainties are not overlooked.

Prioritizing important uncertainties

JLA Working Partnerships need to draw on existing UK experience of involving patients and advocates for patients in research and agenda setting for the NHS (Oliver et al. Health Technology Assessment 2004;8. Telford et al. Health Expectations 2004;7:209-20).

It is important to adopt a formal and transparent approach to priority setting of uncertainties, drawing on existing methods (Townsend et al. Health Technology Assessment 2003;7), and taking account of importance (burden of disease), variation in practice in treatments/clinical care, plausibility, and what can be achieved in additional research.

JLA meeting planning groups will have to develop methods for priority setting. These may include voting and consensus development methods.
We encourage JLA Working Partnerships to consult with constituencies beyond their memberships, both at the outset and when draft priorities have been identified.

Involvement of relevant JLA Affiliates (e.g. Medical Research Council (MRC), NHS Research & Development Programme) as observers at JLA meetings will keep influential bodies informed, and should facilitate action on conclusions reached at the meetings. However, maintenance of observer status for Affiliates is essential and it must be recognised that the responsibility for planning and running meetings rests entirely with the JLA Working Partnerships.

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