Article type
Abstract
"Background: During the COVID-19 pandemic, a living guideline approach was adopted by the National Institute for Health and Care Excellence (NICE) to rapidly produce and update COVID-19 guidelines. Since then, similar processes have been adopted to rapidly update guideline recommendations in other disease areas (e.g., breast cancer). Patient and public involvement (PPI) is seen as an essential part of guideline development, but the rapid nature of living guidelines can prevent the implementation of best practice in PPI. Involving patients and carers in living guidelines ensures they include the values, needs and preferences that are important to the people that guidelines are intended for.
Objectives: There are three objectives: 1) To explore the barriers, facilitators, and strategies of meaningful PPI from the perspectives of both guideline developer staff and patient and carer members developing UK COVID-19 living guidelines. 2) To co-develop an action plan outlining PPI methods and strategies for continual engagement. 3) To implement and test a menu of PPI support options within rapid updates for breast cancer guidelines in NICE.
Methods: All patient and carer members (n=10) and guideline developer staff (n=6) and chair (n=1) involved in developing three COVID-19 living guidelines were invited to take part in focus groups. A semi-structured interview guide was created and informed by a PPI framework. Thematic content analysis was employed, including theme triangulation and respondent validation. Focus group participants were invited to a workshop to co-create the action plan of PPI strategies. The action plan was implemented as a menu of support options within the breast cancer rapid guideline updates.
Results: Fourteen participants were involved in three focus groups. Themes included (1) effective PPI strategies; (2) PPI strategies that enable patient and carer members to have impact; (3) barriers to impact; and, (4) maintaining continual PPI engagement in living guidelines. A total of 31 actions were co-produced. Positive preliminary feedback was received on the implementation of new strategies in the breast cancer guideline updates.
Conclusions: PPI strategies and methods that lead to impact will be discussed and may be generalisable to living guideline developers .
"
Objectives: There are three objectives: 1) To explore the barriers, facilitators, and strategies of meaningful PPI from the perspectives of both guideline developer staff and patient and carer members developing UK COVID-19 living guidelines. 2) To co-develop an action plan outlining PPI methods and strategies for continual engagement. 3) To implement and test a menu of PPI support options within rapid updates for breast cancer guidelines in NICE.
Methods: All patient and carer members (n=10) and guideline developer staff (n=6) and chair (n=1) involved in developing three COVID-19 living guidelines were invited to take part in focus groups. A semi-structured interview guide was created and informed by a PPI framework. Thematic content analysis was employed, including theme triangulation and respondent validation. Focus group participants were invited to a workshop to co-create the action plan of PPI strategies. The action plan was implemented as a menu of support options within the breast cancer rapid guideline updates.
Results: Fourteen participants were involved in three focus groups. Themes included (1) effective PPI strategies; (2) PPI strategies that enable patient and carer members to have impact; (3) barriers to impact; and, (4) maintaining continual PPI engagement in living guidelines. A total of 31 actions were co-produced. Positive preliminary feedback was received on the implementation of new strategies in the breast cancer guideline updates.
Conclusions: PPI strategies and methods that lead to impact will be discussed and may be generalisable to living guideline developers .
"