e-Patient Dave: How the Patient Engagement Movement is Evolving

April 10, 2014
Dave deBronkart, famed and noted patient engagement advocate, knows all about sending the right kind of message to any institution, especially one that is as established as healthcare. In an interview with HCI, he previews his message for the upcoming Healthcare Informatics Executive Summit

Dave deBronkart, famed and noted patient engagement advocate, knows all about sending the right kind of message to any institution, especially one that is as established as healthcare.

“My slogan, ‘Let the patients help,’ is carefully chosen. I worked in marketing my whole life before [my patient advocacy career] happened, and so the message is not, ‘I know better than you.’ The message isn’t ‘Doctors suck or healthcare is corrupt,’” says deBronkart, who goes by the moniker e-Patient Dave. His message is all about enabling and empowering patients in their healthcare.

deBronkart will be sharing that message in May at the Healthcare Informatics Executive Summit in San Francisco. He will speak to an audience of healthcare IT leaders about the perversity of keeping patients uninformed and then saying those same patients are ignorant.  

“If people are not going to have access to their information then of course they are not going to be useful partners to their clinicians,” deBronkart says in an interview with HCI, previewing his upcoming keynote at the Summit. Go here to register for that talk and for access to the rest of the Summit, which includes insights from Don Goldmann, M.D., Chief Medical and Scientific Officer, Institute for Healthcare Improvement (IHI) and Russell P. Branzell, President and CEO, College of Healthcare Information Management Executives (CHIME).

A cancer survivor, deBronkart’s life turned when he wrote a blog post that detailed his frustrations with the Google Health platform, a service which has since been discontinued. This began his patient advocacy career and within a year, he was testifying for patient access to the medical record under Meaningful Use. He has been an active voice in the patient advocate realm, going from conference to conference, audience to audience, sharing his “Let the patients help” creed.

In terms of where he sees the movement thus far, he is optimistic but recognizes a lot has to be developed. Overall though, deBronkart says the OpenNotes study showed that there should be no more debate on whether or not patients should have access to their medical records.

“The game is over regarding the question of ‘Is there any point to letting patients have access to their information?’” he says. Plus, deBronkart adds, allowing this access will ensure data quality. This is something deBronkart touched upon recently at HIMSS.

The important factor now is the free flow of data, he says, which enables this access. Also, he says a process has to be developed to allow patients to fix and report errors in their data. These things he says are natural part of the early maturity of IT in a new industry.

deBronkart is encouraged by what he sees as the “very early stages” of patient data being “exposed to a visible class of new stakeholders.” He compares this evolution of the consumerization of health data to the genesis of the personal computer in the 1980s, which eventually became more consumer-focused as more people used them and got experience.

He points to two particular projects, the WikiProject Medicine and Khan Academy, which he sees as an example of the increasing consumerization of data and how patients are being allowed to participate in their own care. While they are not specific to IT, they are examples of what he calls “the coming together of the assets.”

The Wiki project started by James Heilman, M.D., a Canadian emergency physician, is a non-profit where stakeholders of all kinds, including patients, can access and contribute to vetted medical content, which has been produced by established several medical content providers. Recently, a professor at the University of California at San Francisco School of Medicine invited fourth-year medical students to participate as editors. The Khan Academy is a nonprofit providing free tutorials on medical and other topics, for anyone who wishes to learn.

For more from e-Patient Dave, register for the Healthcare Informatics Executive Summit April 30-May 2 in San Francisco.

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