EVOLVE Phase 3
Research type
Research Study
Full title
EVOLVE: giving patients a mEaningful VOice in the design and deLiVery of carE (Phase 3)
IRAS ID
263431
Contact name
Sara MacLennan
Contact email
Duration of Study in the UK
0 years, 4 months, 0 days
Research summary
Clinical practice guidelines are recommendations based on the best available clinical evidence. These guidelines are a tool to support clinicians and patients to make informed health care decisions. Patient involvement within development of clinical practice guidelines has been shown to improve quality of care and is particularly important when considering “preference-sensitive” decisions, where preference is more important when considering pros and cons of treatment options. An example of a “preference-sensitive” decision is the choice of treatment for early (localised) prostate cancer, where patient characteristics such as age, education and socioeconomic status as well as their views and experiences have been shown to indicate differences in patient treatment and outcome preferences. The EVOLVE study aims to develop a model of meaningful inclusion of genitourinary cancer patients in guideline development in Europe. EVOLVE is a unique collaboration of a professional society (European Association of Urology), guideline panels, researchers, clinicians and patient representatives to improve guideline development and implementation for genitourinary cancers, a core activity of the European Association of Urology (EAU). This study will involve five distinct but inter-related phases. We will survey existing models of patient involvement via systematic review (Phase 1) and explore barriers and facilitators for patient involvement in guidelines in collaboration with the EAU Guideline Panels for Prostate Cancer, Testicular Cancer, Renal Cell Carcinoma and Bladder Cancer (Phase 2). Areas for considering patient preferences and values will be identified through a second systematic review, then prioritised by patients and clinicians via an international Delphi survey (Phase 3). The best-fit model for patient involvement will be tested for the identified priorities. Normalisation Process Theory will evaluate the model implementation and a strategy will be developed to assess the impact of patient involvement on guideline adherence and qualitative patient outcomes (Phases 4-5). Phase 3 will directly involve genitourinary cancer patients.
REC name
West Midlands - Solihull Research Ethics Committee
REC reference
19/WM/0306
Date of REC Opinion
9 Oct 2019
REC opinion
Favourable Opinion