title: Patients, health information, and guidelines: A focus-group study.
abstract: 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.
  
  
  OBJECTIVE
  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.
authors.affiliation: a General Practice, School of Primary, Aboriginal and Rural Health Care, University of Western Australia.|b University of Helsinki, Department of General Practice , and Helsinki University Central Hospital, Unit of Primary Health Care , Helsinki , Finland.
authors.forename: Helena
authors.initials: H
authors.lastname: Liira
authors.affiliation: c Duodecim Medical Publications Ltd , Helsinki , Finland.
authors.forename: Osmo
authors.initials: O
authors.lastname: Saarelma
authors.affiliation: d Scottish Intercollegiate Guidelines Network, NHS Healthcare Improvement Scotland , Glasgow , Scotland.
authors.forename: Margaret
authors.initials: M
authors.lastname: Callaghan
authors.affiliation: d Scottish Intercollegiate Guidelines Network, NHS Healthcare Improvement Scotland , Glasgow , Scotland.
authors.forename: Robin
authors.initials: R
authors.lastname: Harbour
authors.affiliation: c Duodecim Medical Publications Ltd , Helsinki , Finland.
authors.forename: Jukkapekka
authors.initials: J
authors.lastname: Jousimaa
authors.affiliation: b University of Helsinki, Department of General Practice , and Helsinki University Central Hospital, Unit of Primary Health Care , Helsinki , Finland.|c Duodecim Medical Publications Ltd , Helsinki , Finland.
authors.forename: Ilkka
authors.initials: I
authors.lastname: Kunnamo
authors.affiliation: e Division of Population Health Sciences, University of Dundee , UK.
authors.forename: Kirsty
authors.initials: K
authors.lastname: Loudon
authors.affiliation: f National Institute for Health and Care Excellence , Manchester , UK.
authors.forename: Emma
authors.initials: E
authors.lastname: Mcfarlane
authors.affiliation: g Health Services Research Unit, University of Aberdeen , Aberdeen , UK.
authors.forename: Shaun
authors.initials: S
authors.lastname: Treweek
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D054626:Consumer Health Information; D005260:Female; D017144:Focus Groups; D006266:Health Education; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D033181:Information Dissemination; D020407:Internet; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic; D010358:Patient Participation; D036301:Qualitative Research; D055815:Young Adult
keywords: Clinical guidelines; Finland; concepts; focus groups; general practice; patient information; patient versions