Involvement of people with learning disabilities in guidance development – lost in translation?




Long oral session 6: Guideline development


Wednesday 13 September 2017 - 16:00 to 17:30


All authors in correct order:

Karpusheff J1, Shaw B1
1 NICE, United Kingdom
Presenting author and contact person

Presenting author:

Justine Karpusheff

Contact person:

Abstract text
Background: Patient and public involvement is a core principle of many guideline programmes, and is cited as an indicator of quality. However, there can be challenges in how best to involve people who may have specific barriers to full and meaningful engagement.
NICE is developing 2 guidelines that focus on care for people with learning disabilities (PLD). At GIN 2016, we provided early learning from supporting PLD; this updates our learning.

Objectives: We will describe the process of supporting the full involvement of PLD and give examples of resulting recommendations that reflect this input.

Methods: NICE have appointed PLD on the guideline committee and made adjustments to support full involvement. We describe those adjustments and how this supported PLD to fully contribute.

Results:A number of adjustments have been made to the standard NICE process. These are:
• use of facilitators to review evidence with lay members prior to the meeting;
• visual representation of evidence statements to inform group work;
• translation of evidence statements into Easy Read; and,
• accessible frameworks for decision making from consensus.
The adjustments have presented challenges, but are welcomed as ensuring recommendations reflect the experience of those in receipt of care. And indeed, unintended benefits have been seen for other committee members.
Ongoing review of adjustments has allowed us to identify learning and make changes. For example, the early translation of evidence statements into Easy Read led to statements that were too simplified and lost important details. However, all the committee members welcomed the consensus framework as a transparent approach to decision making.

Conclusions:To fully involve people with learning disabilities there is a need to make adjustments to usual practice. The majority of adjustments can be cost neutral and easily incorporated. However, adjustments need to ensure that important aspects of the evidence are not lost in translation.