Who is reading what you write?

By Molly Merrill
09:46 AM

Most patients who write a blog don’t ever think their doctors will read it, just as doctors don’t ever expect that their patients will read their notes. But what if this changed?  Experts think there may be some “unintended consequences.”

Three reasons a patient keeps a blog are: they find it a helpful way to track their progress, and an outlet for their emotions; it is a way to keep friends and family up-to-date on their condition; and they wish to help people in similar situations, says Lisa Gualtieri, adjunct clinical professor in the Health Communication Program at Tufts University School of Medicine and course director for the Tufts Summer Institute on Web Strategies for Health Communication. But for Jonathan L. Zittrain, a professor of Internet law at Harvard Law School and a faculty co-director of Harvard's Berkman Center for Internet and Society, a blog became a platform for physicians to collaborate on his diagnosis.

The speed at which information can be created and shared on the Internet can have some unintended consequences, says Robert Coffield, a healthcare lawyer practicing at Flaherty, Sensabaugh & Bonasso, PLLC and author of the Health Care Law blog. Putting your health information on the Internet means it can be searched by anyone that wants to Google it. And this is a “very real concern as we crowd source personal health information,” says Pamela Katz Ressler, RN, founder of Stress Resources and an adjunct faculty member at University of Massachusetts – Boston, College of Nursing and Health Sciences. For example, says Coffield, it is becoming more and more common for the information that is shared via social media to be used against a plaintiff during litigation.

Deciding whether or not to put health information online is all about how valuable you see the possible benefit – in Zittrain’s case a possible diagnosis.  But the Internet is even changing how care is being delivered, says Coffield, from an “authoritarian model of care,” to one where the patient can become part of the decision-making process. 

OpenNotes, a one -year intervention that will allow patients to access their primary care physician’s visit notes through an electronic medical record, is currently being piloted by physicians at Beth Israel Deaconess Medical Center, Geisinger Health System, and UW Harborview Medical Center. Gualtieri says it will be interesting to see if doctors’ change the way they take notes if they know their patients are reading them. Project officials say one of the goals of the trial is to see how it will affect the physician-patient relationship.

“As healthcare and information moves forward it will be essential for patients and healthcare members to work together to gather information and work together in assessing its relevance to one’s particular circumstances, honoring the knowledge and experience each brings to the table,” said Ressler.

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