Providing a Framework for Meaningful Patient Involvement in Clinical Practice Guideline Development and Implementation

Josefine Björkqvist*, Rachel H. Giles, Philip Cornford, Makaroff Lydia, Mieke Van Hemelrijck, Julie Darraugh, Cowl Jane, Steven MacLennan, Sara MacLennan

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

4 Citations (Scopus)
3 Downloads (Pure)


The importance of patient involvement in guideline development is internationally recognised, yet there is a lack of clear methodology for integrating patient preferences and values in guidelines and a need to identify the optimum stages for involving patients in guideline production. European Association of Urology (EAU) guidelines have international reach, a rigorous guideline production process, an established patient information section, and existing links with European cancer patient organisations. This makes the EAU the ideal setting to test a framework for patient involvement in guideline development for genitourinary cancers. The EVOLVE study is a unique collaboration involving a professional society, guideline panels, researchers, clinicians, and patient organisations with the aim of designing a framework for meaningful patient involvement in guideline production. Stages for considering patient preferences and values were identified via systematic review and interviews with key stakeholders, then prioritised by patients and clinicians via an international Delphi study. The final EVOLVE framework will be tested within EAU guideline panels and a strategy to assess the impact of patient involvement in guidelines will be developed.
Original languageEnglish
Pages (from-to)947-950
Number of pages4
JournalEuropean Urology Focus
Issue number5
Early online date5 Nov 2021
Publication statusPublished - 2021

Bibliographical note

Acknowledgments: The EVOLVE research team acknowledges the valuable support and participation of Guideline Office staff and Guideline Panel members at the European Association of Urology (EAU). We would like to thank all study participants and patient and medical organisations who promoted the EVOLVE study. We also thank the following organisations for their help in study recruitment: Action Bladder Cancer; Cancer Research UK; Europa Uomo; EAU; European Association of Urology Nurses; European Cancer Patient Coalition; Fight Bladder Cancer; International Kidney Cancer Coalition; Kidney Cancer Support Network; UCAN Urological CANcer Charity; Prostate Cancer UK; and World Bladder Cancer Patient Coalition. The EVOLVE study is funded by the NHS Grampian Endowment Fund via the urological cancer charity UCAN.


  • Urological cancer
  • patient participation
  • Clinical practice guidelines
  • Urology
  • quality of care
  • Patient and Public Involvement


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