Dr Tom Delbanco - The Benefits of Sharing Medical Details with a Patient Will Outweigh the Risks




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Mar 13, 2017
by Andrea Abellan
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Dr Tom Delbanco - The Benefits of Sharing Medical Details with a Patient Will Outweigh the Risks

Multiple time Salzburg Global Fellow discusses electronic medical records and his hopes for Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship Dr. Tom Delbanco (left) and Jan Walker (right), co-founders of OpenNotes

After hearing the enthusiasm with which Tom Delbanco talks about his life in medicine, nobody would say he could have done anything else other than work in that field. Surprisingly, at college, he was studying to be a political scientist, before eventually changing his career plan. Dr. Delbanco has led three previous sessions at Salzburg Global Seminar. He says this is the perfect place for someone like him, with “the generalist disease,” as it always helps to have his curiosity piqued here. Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship is his fourth session and, in contrast to what happened on previous occasions, this time he hopes to act more as an observer rather than as a leader of the discussions.

OpenNotes is one of his most acknowledged achievements. He has led the organization together with Jan Walker since its creation in 2010. Dr. Delbanco recognizes the impact that his participation at the Salzburg Global Session, Through the Patient’s Eyes: Collaboration between Patients and Health Care Professionals, has had on him: serving as an inspiration to develop the digital platform. Discussions about the mythic nation of PeoplePower gave him the basics of what a patient-centered system should look like. He shared the outcomes of that meeting on a paper which has been circulated among the current group of participants at Schloss Leopoldskron. This paper is entitled Healthcare in a land called PeoplePower: nothing about me without me. Looking at the improvements in health technology 19 years later its seems that PeoplePower was more than a utopian proposal. 

The book Asylums: Essays on the Condition of the Social Situation of Mental Patients and Other Inmates, written by sociologist Erving Goffman, has also played a key role in the development of Dr. Delbanco’s ideas. The book describes mental hospitals, concentration camps, and prisons, as “total institutions,” places where two groups of people are forced to live together. One of the groups is in charge of taking care of the other that certainly does not want to be there. Unhappily, the two groups tend to form separate societies, with an invisible wall between them. In reading this book, Dr. Delbanco started to reflect on “the invisible walls that also divides patients and health care workers,” a phenomenon he has experienced from both angles.

Dr. Delbanco served as the founding Chief of the Division of General Medicine and Primary Care at Beth Israel Deaconess Medical Center in Boston for 30 years, and during this time he could see “how the medical staff interacted with each other while ignoring patients.” When he was a patient himself he could understand the situation better and realize the urgency of “breaking the walls down,” he says. 

Dr. Delbanco shows his positivity regarding the future of electronic medical records. But he recognizes a backlash towards them coming from some health professionals. “Doctors may say they hate them, but at the same time they panic if you ask what would happen if we would stop using them.” Dr. Delbanco trains his students on the use of digital platforms, even if for him the best teachers are still patients: “It’s equally important to have patients able to correct the notes a doctor has written about them.” He is an advocate of transparency, but he still recognizes the negative impact that sharing all the details with a patient can have. Overall, he thinks “the benefits will outweigh the risks.” 

When asked about where the US medical system is going now, with everyone now focused on the political situation in the country, Dr. Delbanco answers from a very medical perspective. “It’s very easy to make a diagnosis, but hard to come up with the treatment.’’ For him, the main concern is still how to subsidize the health system and assist the 20 million citizens who are still not covered. Overall, he expects that the government will have a difficult time undoing past achievements. 

Dr. Delbanco talks about himself as a person who finds it very difficult to slow down and as someone who likes “solving problems fixing things that do not work.” In fact, now that OpenNotes is working efficiently, with more than 12 million patients registered in its database, Dr. Delbanco has decided to get involved in a new project. OurNotes is his next plan, in partnership again with Jan Walker, who describes the project as “going from passive reading patients to active writing ones.” The idea is to have patients co-produce the records by writing their own medical history and stating their own priorities. 

Dr. Delbanco expects to leave Salzburg feeling surprised as has happened in every past occasion. He wants to go home thinking “Why hadn’t I thought about these ideas before?!” He also wants to keep this session alive after it ends on Wednesday. 

“I believe that new media and social media platforms are changing a lot and can help us with this purpose,” Dr. Delbanco concludes. 

Read more here in our session newsletter.

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The Salzburg Global program Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship is part of the multi-year series Health and Health Care Innovation in the 21st Century. The session is being supported by OpenNotes. More information on the session can be found here: www.salzburglobal.org/go/553. You can follow all the discussions on Twitter by following the hashtag #SGShealth

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