Prioritizing Research: Patients, Carers, and Clinicians Working Together to Identify and Prioritize Important Clinical Uncertainties in Urinary Incontinence

Research often neglects important gaps in existing evidence. Throughout healthcare, clinicians and patients face avoidable clinical uncertainties daily, making decisions about treatments without reliable evidence about their effects. This partnership of patients and clinicians aimed to identify and prioritize clinical uncertainties relating to treatment of urinary incontinence (UI). Methods: UK clinician and patient organizations whose remit includes UT were invited to participate. Participating organizations consulted memberships to identify uncertainties affecting treatment decisions. Uncertainties were also identified in published research recommendations. Prioritization involved two phases: shortlisting of uncertainties by organizations; patient-clinician prioritization using established consensus methods. Prioritized uncertainties were verified by checking any available relevant up-to-date published systematic reviews. Results: Thirty organizations were invited; 8 patient and 13 clinician organizations participated. Consultation generated 417 perceived uncertainties, research recommendations 131. Refining, excluding and combining produced a list of 226. Prioritization shortlisted 29 uncertainties, then a top ten (5 submitted by clinicians, 4 by patients, 1 from research recommendations). Conclusions: The partnership successfully developed and tested a systematic and transparent methodology for patient clinician consultation and consensus. Through consensus, unanswered research questions of importance to patients and clinicians were identified and prioritized. The final list reflects the heterogeneity of populations, treatments and evidence needs associated with UI. Some prioritized uncertainties relate to treatments that are widely used yet whose effects are not thoroughly understood, some to access to care, some to precise surgical questions. Research needs to address the uncertainties range from systematic reviewing to primary research. Neurourol. Urodynam. 29:708-714, 2010. (C) 2010 Wiley-Liss, Inc.