Prioritizing research: Patients, carers, and clinicians working together to identify and prioritize important clinical uncertainties in urinary incontinence

Aims 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 UI 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. © 2010 Wiley‐Liss, Inc.