Identifying and prioritizing uncertainties: patient and clinician engagement in the identification of research questions

Abstract

Background: To arrive at an agreed, prioritized ranking of treatment uncertainties in asthma that need further research, by developing a collaboration of patients, carers and clinicians, facilitated by the James Lind Alliance Working Partnership between Asthma UK and the British Thoracic Society.

Methods: A four-step procedure: (1) establish a collaborative Working Partnership; (2) identify and collect treatment uncertainties by using a patient survey and analysing existing systematic reviews, clinical guidelines and query-answering services; (3) categorize uncertainties; and (4) convene a workshop using a nominal group process to establish a ranked prioritization of treatment uncertainties in asthma.

Findings: Agreement and rankings were reached for 10 treatment uncertainties. The highest was given to the uncertainty surrounding the adverse effects of inhaled and oral steroids. The top three priorities dealt with clinical management issues, where uncertainties still exist, namely concerns about the side effects of inhaled and oral steroids, how to manage asthma when other illnesses exist or how to rely on personal decisions in an ever-changing illness (self-management).

Interpretation: The key outcome is the generation of a prioritized list of treatment uncertainties in asthma, agreed by a collaboration of patients and health professionals, to inform the commissioning of new research. Such a large number of patient-identified treatment uncertainties had not previously been identified in the literature, an indication perhaps that asthma self-management is a neglected research area. Whether the results have an influence of research funding decisions is not yet known.