Putting it into Practice

Title: Co-creation of patient engagement quality guidance for medicines development: an international multi-stakeholder initiative.
Author: Katherine Deane, Laure Delbecque, Oleksandr Gorbenko, Anne Marie Hamoir, Anton Hoos, Begonya Nafria, Chi Pakarinen, Ify Sargeant, Dawn P Richards, Soren Eik Skovlund, Nicholas Brooke on behalf of the PFMD Patient Engagement Meta-framework Co-creation Team.
Date Published: 2019
Reference: BMJ Innovations Published Online First: doi: 10.1136/bmjinnov-2018-000317
Are service users or carers authors: No/Not Known

Abstract: Aim: To produce guidance for patient engagement in medicines development. Method: A literature review gathered published examples of patient engagement. Multistakeholder groups drafted PE Quality Guidance drawing on the published evidence and their own expertise. The guidance was evaluated by public consultation. Examples of projects with good engagement practice were identified and assessed against the PE Quality Criteria to create a Book of Good Practice (BOGP). Results: Seventy-six participants from 51 organisations participated in nine multi-stakeholder meetings (2016–2018). A shortlist of 20 relevant PE initiatives were identified. The PE Quality Guidance was agreed to be useful for achieving quality PE in practice, understandable, easy to use, and comprehensive. Overall, eight initiatives from the shortlist and from meeting participants were selected for inclusion in the BOGP.

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Categories: journal article
service users and carers
researchers
relevant to all service users
general principles of good practice
guidance/guidelines
General guidance on involving the public in research

Date Entered: 2019/04/08

Date Edited: 2019/04/08

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