Patients, health information, and guidelines: A focus-group study

Helena Liira, Osmo Saarelma, Margaret Callaghan, Robin Harbour, Jukkapekka Jousimaa, Ilkka Kunnamo, Kirsty Loudon, Emma McFarlane, Shaun Patrick Treweek

Research output: Contribution to journalArticlepeer-review

11 Citations (Scopus)
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Background. Evidence-based clinical guidelines could support shared decision-making and help patients to participate actively in their care. However, it is not well known how patients view guidelines as a source of health information. This qualitative study aimed to assess what patients know about guidelines, and what they think of their presentation formats. Research question. What is the role of guidelines as health information for patients and how could the implementation of evidence-based information for patients be improved? Methods. A qualitative study with focus groups that were built around a semi-structured topic guide. Focus groups were audiotaped and transcribed and analysed using a phenomenographic approach. Results. Five focus groups were carried out in 2012 with a total of 23 participants. Patients searched for health information from the Internet or consulted health professionals or their personal networks. The concepts of guidelines included instructions or standards for health professionals, information given by a health professional to the patient, and material to protect and promote the interests of patients. Some patients did not have a concept for guidelines. Patients felt that health information was abundant and its quality sometimes difficult to assess. They respected conciseness, clarity, clear structure, and specialists or well-known organizations as authors of health information. Patients would like health professionals to deliver and clarify written materials to them or point out to them the relevant Internet sites. Conclusions. The concept of guidelines was not well known among our interviewees; however, they expressed an interest in having more communication on health information, both written information and clarifications with their health professionals.
Original languageEnglish
Pages (from-to)212-219
Number of pages8
JournalScandinavian Journal of Primary Health Care
Issue number3
Early online date24 Jul 2015
Publication statusPublished - 2015

Bibliographical note

Date of Acceptance: 01/06/2015

The authors wish to thank all the focus-group participants for their time and interest in this study, Minna Pellikka for help in the recruitment process as well as the DECIDE study group and especially Karen Graham and Judith Thornton for helpful discussions that have influenced this paper. This project has received funding from the European Union’s Seventh Framework Program for research, technological development, and demonstration under grant agreement 258583


  • clinical guidelines
  • patient information
  • patient versions
  • concepts
  • focus groups
  • Finland
  • general practice


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