Background: Patient and public involvement is a core principle of many guideline programmes, and is often cited as an indicator of quality (1,2). However, there can be challenges in how best to involve people who may have specific barriers to full and meaningful engagement in complex decision-making processes. In order to support a pilot of involving people with learning disabilities (PLD) in national guidelines, we reviewed the evidence on the impact of involving PLD in complex decision making.
Objectives: To evaluate the impact of involving people with learning disabilities (PLD) in policy development.
Methods: We undertook a systematic review of published and grey literature. We selected 166 papers (based on title and abstract), from an initial database of 3582 references. Of these, 5 were unavailable, and 2 full text papers met inclusion criteria. A further 6 papers are on order.
Results: The aim was assess the impact of involving PLD in policy development on:
1) PLD involved in policy development;
2) others involved in policy development (e.g. committee members, staff); and,
3) policy outcomes.
Themes identified to date relate only to theme 1, and are:
• Support: adjustments and relationships
• Structures: processes/mode of operating
• Reasons for participating: democratic, ‘status symbol’, communitarian
• Experiences: positive and negative
Conclusion: PLD can be supported to contribute to and participate in policy development; and the experience can be positive, particularly if adjustments are made. However, there is no evidence identified that evaluates the impact of this on others involved in the process or on the decisions themselves. Further research is needed to understand this.
1. Brouwers M, Kho ME, Browman GP, Cluzeau F, feder G, Fervers B, Hanna S, Makarski J on behalf of the AGREE Next Steps Consortium. AGREE II: Advancing guideline development, reporting and evaluation in healthcare. Can Med Assoc J. Dec 2010, 182:E839-842
2. Standards for developing trustworthy guidelines 2011 http://www.nationalacademies.org/hmd/Reports/2011/Clinical-Practice-Guidelines-We-Can-Trust/Standards.aspx