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Patients and public

DECIDE work with patients and the public
We have developed presentation strategies that can be used with versions of guidelines intended for the public, patients and carers.  People are interested in using clinical guidelines in their care and treatment but many of the people we spoke to were unclear about the role and sources of information on guidelines.  To a first approximation, members of the public do not know that guidelines exist so guideline producers should make as few assumptions as possible when developing their materials for the public, patients and carers.

In addition to using language that is as simple as possible, it is important to make clear who the patient version is for, what it contains, make clear what the recommendations actually are and presenting numerical information should be considered (it generally isn’t but it can increase understanding).  In common with other DECIDE work, a layered approach to presenting information is appreciated.  These strategies have become a central part of the updated chapter on producing patient versions of guidelines in the Guidelines International Network (G-I-N) Public Toolkit. Want more information?  A longer summary of our work with the public, patients and carers can be read as a pdf.

Publications
1. Improving the user experience of patient versions of clinical guidelines: user testing of a Scottish Intercollegiate Guideline Network (SIGN) patient version (http://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-016-1287-8).

2. Patients, health information, and guidelines: A focus-group study  (http://www.tandfonline.com/doi/full/10.3109/02813432.2015.1067517).

3. Patient and public attitudes to and awareness of clinical practice guidelines: a systematic review with thematic and narrative syntheses (http://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-14-321).

4. Dissemination of clinical practice guidelines: A content analysis of patient versions (Under review).

5. What do patients and the public know about clinical practice guidelines and what do they want from them?  A qualitative study (accepted).

Outputs 

1. The G-I-N Public Toolkit (http://www.g-i-n.net/working-groups/gin-public/toolkit)

What is happening now?
G-I-N will continue to update the work described in the Public Toolkit.  Several guideline producers and now using DECIDE strategies and these producers may refine them as they gain more experience with them.  The GRADE Working Group will continue its interest in how to present guideline-based material to the public.  Work on decision aids that patients can use together with their health professionals is being continued by the MAGIC project (see DECIDE work with health professionals).