Anne Townsend*, University of British Columbia, Vancouver, Canada Paul Adam, Mary Pack Centre, Vancouver, Canada Catherine Backman, University of British Columbia, Vancouver, Canada Linda C Li, University of British Columbia, Vancouver, Canada Track: Research Presentation Topic: Consumer empowerment, patient-physician relationship, and sociotechnical issues Presentation Type: Poster presentation Submission Type: Single Presentation Last modified: 2012-09-10

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Background: People’s use of the Internet for health information has risen swiftly. This is associated with accelerating the shift from ‘passive patient’ to informed and ‘empowered’ partner’ and the emergence of the e-patient. But we have poor knowledge of how Internet use impacts people’s changing perceptions of the patient-provider relationship or how it influences self-management, help seeking and decision-making. Considering the huge potential to change the face of health care an ethical analysis of the potential benefits and harms is needed.
Objective: In this paper we aim to better understand how people in the early stages of a long- term health condition used the Internet and how it impacted their illness actions, decision-making and consulting. We also seek to identify and analyze emerging ethical concerns.
Methods: Between 2007 and 2009 we conducted in-depth interviews in British Columbia, Canada, with 46 people who had rheumatoid arthritis (RA) diagnosis ≤12 months. RA is a debilitating and painful chronic illness that requires prompt diagnosis and medications to limit disease and prevent irreversible joint damage. The open-ended questions were designed to elicit descriptions of help-seeking and self-managing experiences, specifically decisions around consulting a health care provider, treatment options and gaining a diagnosis. Analysis was informed by grounded theory and a narrative approach.
Results: The theme of Internet use emerged from the data. Initial analysis of this theme showed that participants discussed Internet health use in a range of ways, which we have organized into four main types: 1) ‘Grab and go’ where people had a strategy of going to a site with a specific question and stayed focused on getting the information and then deliberately left the website so they could avoid seeing information that could induce anxiety;’ 2) ‘Hunter-gatherers;’ tended to ‘hunt’ for a wide range of information about their symptoms, possible diagnosis and treatment options. They would gather the information and use for practical reasons for concrete gains e.g. to gain a specialist referral from their family physician or engage family support; 3) ‘Non-users,’ some did not use the Internet. Reasons included: they were not Internet users; they had no interest in searching for information; they had no access to the Internet; they consciously avoided the Internet fearful of what they may find; 4) ‘Advocate users’, some described how their family members would search the Internet for them as a support regarding decision-making about a consultation and seeking a diagnosis.
Conclusions: The Internet provides various opportunities for people to actively pursue a diagnosis take part in informed decision-making and change the balance of the patient-doctor relationship in terms of ‘gatekeepers’ of relevant knowledge leading to a diagnosis. However, it should not be assumed that it is necessarily empowering, or that all patients want to become empowered and shift the patient-doctor relationship. We need more information on the benefits and challenges of Internet health use for people/patients and health care providers in order to assess how it can fulfill its promise and limit harms.