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

Naomi Fearns, Joanna Kelly, Margaret Callaghan, Karen Graham, Kirsty Loudon, Robin Harbour, Nancy Santesso, Emma McFarlane, Judith Thornton, Shaun Treweek

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25 Citations (Scopus)
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Guideline producers are increasingly producing versions of guidelines for the public. The aim of this study was to explore what patients and the public understand about the purpose and production of clinical guidelines, and what they want from clinical guidelines to support their healthcare decisions.

Participants were purposively selected to represent a range of the likely users of patient versions of guidelines, including individuals with health conditions (diabetes and depression), general members of the public, health communication professionals and a group of young people. Participants were asked about their awareness and understanding of clinical guidelines and presented with scenario recommendations, or draft materials from patient guidelines to prompt discussion. Each discussion was facilitated by one or two researchers. All focus groups were recorded and transcribed prior to analysis. Data were analysed using framework analysis.

We ran nine focus groups involving 62 individuals, supplemented by four interviews with people experiencing homelessness. Eight groups were held in Scotland, one in England. The four interviews were held in Scotland. The framework analysis yielded five themes: access and awareness; what patients want to know; properties of guidelines; presenting evidence; and format. Awareness of guidelines was low. Participants emphasised the need for information that enables them to choose between treatment options, including harms. They would like help with this from healthcare professionals, especially general practitioners. Participants differed in their support for the inclusion of numerical information and graphs.

Members of the public want information to help them choose between treatments, including information on harms, particularly to support shared decisions with health professionals. Presenting numerical information is a challenge and layered approaches that present information in stages may be helpful. Ignoring the themes identified in this study is likely to lead to materials that fail to support public and patient healthcare decision making.
Original languageEnglish
Article number74
Pages (from-to)1-13
Number of pages13
JournalBMC Health Services Research
Publication statusPublished - 24 Feb 2016

Bibliographical note


Dr Ilkka Kukanammo and Dr Helena Liira, of the School of Medicine, University of Tampere, Finland, provided input on this research for which we are very grateful.

Source of funding

DECIDE (Developing and Evaluating Communication strategies to support Informed Decision and practice based on Evidence) is funded by the European Union Seventh Framework Programme (Fp7/2007-2013) under grant agreement number 258583. The Health Services Research Unit is funded by the Chief Scientist Office of the Scottish Government Health Directorates.


  • guidlines
  • clinical practice guideline
  • patient guidelines
  • patient version


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