title: Online health information seeking: how people with multiple sclerosis find, assess and integrate treatment information to manage their health.
abstract: The Internet is increasingly prominent as a source of health information for people with multiple sclerosis (MS). But there has been little exploration of the needs, experiences and preferences of people with MS for integrating treatment information into decision making, in the context of searching on the Internet. This was the aim of our study.
  
  
  
  Sixty participants (51 people with MS; nine family members) took part in a focus group or online forum. They were asked to describe how they find and assess reliable treatment information (particularly online) and how this changes over time. Thematic analysis was underpinned by a coding frame.
  
  
  
  Participants described that there was both too much information online and too little that applied to them. They spoke of wariness and scepticism but also empowerment. The availability of up-to-date and unbiased treatment information, including practical and lifestyle-related information, was important to many. Many participants were keen to engage in a 'research partnership' with health professionals and developed a range of strategies to enhance the trustworthiness of online information. We use the term 'self-regulation' to capture the variations in information seeking behaviour that participants described over time, as they responded to their changing information needs, their emotional state and growing expertise about MS.
  
  
  
  People with MS have developed a number of strategies to both find and integrate treatment information from a range of sources. Their reflections informed the development of an evidence-based consumer web site based on summaries of MS Cochrane reviews.
authors.affiliation: Centre for Health Communication and Participation, Department of Public Health, School of Public Health and Human Biosciences, La Trobe University, Melbourne, Vic., Australia.
authors.forename: Anneliese J
authors.initials: AJ
authors.lastname: Synnot
authors.affiliation: Centre for Health Communication and Participation, Department of Public Health, School of Public Health and Human Biosciences, La Trobe University, Melbourne, Vic., Australia.
authors.forename: Sophie J
authors.initials: SJ
authors.lastname: Hill
authors.affiliation: Centre for Health Communication and Participation, Department of Public Health, School of Public Health and Human Biosciences, La Trobe University, Melbourne, Vic., Australia.
authors.forename: Kerryn A
authors.initials: KA
authors.lastname: Garner
authors.affiliation: Centre for Health Communication and Participation, Department of Public Health, School of Public Health and Human Biosciences, La Trobe University, Melbourne, Vic., Australia.
authors.forename: Michael P
authors.initials: MP
authors.lastname: Summers
authors.affiliation: Cochrane Multiple Sclerosis and Rare Diseases of the Central Nervous System Review Group, Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico, C. Besta, Milan, Italy.
authors.forename: Graziella
authors.initials: G
authors.lastname: Filippini
authors.affiliation: Public Health Innovation, Population Health Strategic Research Centre, School of Health and Social Development, Deakin University, Melbourne, Vic., Australia.
authors.forename: Richard H
authors.initials: RH
authors.lastname: Osborne
authors.affiliation: Member Services, MS Australia, Perth, WA, Australia.
authors.forename: Sue D P
authors.initials: SD
authors.lastname: Shapland
authors.affiliation: Laboratory for medical research and consumer involvement, Department of Public Health, IRCSS-Mario Negri, Institute for Pharmacological Research, Milan, Italy.
authors.forename: Cinzia
authors.initials: C
authors.lastname: Colombo
authors.affiliation: Laboratory for medical research and consumer involvement, Department of Public Health, IRCSS-Mario Negri, Institute for Pharmacological Research, Milan, Italy.
authors.forename: Paola
authors.initials: P
authors.lastname: Mosconi
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D001294:Attitude to Health; D001315:Australia; D054626:Consumer Health Information / Q000379:methods; D019468:Disease Management; D005260:Female; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D057226:Information Seeking Behavior; D020407:Internet; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000523:psychology* / Q000628:therapy; D010353:Patient Education as Topic / Q000379:methods; D055815:Young Adult
keywords: Internet; health information; multiple sclerosis; qualitative research