By Steven Simon, J. Stewart Evans, Alison Benjamin, David Delano, David Bates
J Med Internet Res 2009 (Aug 06); 11(3):e30
ABSTRACT
Background: In many countries, there has been substantial progress in
establishing the electronic transmission of patients’ health information
between health care providers, but little is known about how best to engage
patients in the process.
Objective: We explored patients’ views about sharing of electronic health
information and their preferences for learning about and participating in this
process.
Methods: Patients in one Massachusetts community in the northeastern
United States were recruited to participate in focus-group discussions. Prior
to discussion, participants completed a written questionnaire that captured
their reactions to draft educational materials and a consent form. The
discussion moderator and two physicians analyzed the moderator’s detailed
notes from each session and participants’ written comments, using an
immersion-crystallization approach.
Results: Three dominant themes emerged: (1) concerns about privacy and
security, (2) the potential benefit to a person’s health, and (3) the desire for more
information about the consent process. On the pre-discussion questionnaire,
55 out of 62 participants (88%) indicated that they would provide consent for
their information to be shared electronically among their health care providers,
given the materials they had reviewed.
Conclusions: Patients are enthusiastic about electronic health information
exchange, recognizing its capacity to improve the quality and safety of health
care; however, they are also concerned about its potential to result in breached
privacy and misuse of health data. As the exchange of electronic health
information becomes more widespread, policy makers will need to ensure
that patients have access to concise educational materials and opportunities
to engage in conversations about the risks and benefits of participation.
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