What Full Transparency Means for Patients and Clinicians




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Mar 12, 2017
by Oscar Tollast
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What Full Transparency Means for Patients and Clinicians

Fellows consider full transparency and what difference it might make in various health systems Participants break off into smaller groups to discuss issues at hand [Photo: Salzburg Global Seminar/Ela Grieshaber]

When contemplating new ideas of recording a patient’s journey through health and illness, one has to look at how each party involved could benefit from it. For example, an Internet-based patient record, as proposed in the Salzburg Global session Through the Patients’ Eyes: Collaboration between Patients and Health Care Professionals, could be easier to edit and track for a patient, and could save more time in the long-term for the clinician. While this may sound appealing, this answer leads us to ask more questions. 

What difference might full transparency make in different health systems around the world? Is the final blow to medical professionalism? Participants of Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship were asked for their thoughts on these questions on the second day of the five-day session.


OpenNotes, which is supporting Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship, is a U.S. organization which encourages health professionals to share the notes they write with the patients they care for. Before considering the pros and cons of transparency, they learned about the organization’s origins.

Speaking at Salzburg Global, Jan Walker, co-founder of OpenNotes, revealed the organization was established following a successful study. Despite doctors having initial concerns they would undertake an increased workload, the 12-month experiment which followed proved to be an overwhelming success.

After 12 months, doctors barely noticed the notes had become accessible. Those who had taken part completed a survey. Of those who responded 99 percent said they would like the experiment to continue. At the end of the study, not one doctor signed off. Patients felt they understood how to take better care of themselves. The study also found those people with the lowest literacy levels appreciated having accessible notes the most. 

The initial study took place in three institutions. All three voted to keep the OpenNotes system in place. 

Participants learned OpenNotes has grown exponentially. Its mission is to get adopted across the US and become the standard of care. The study, which concerned 20,000 patients, started in 2010. The paper was published in 2012, and OpenNotes’ patient database passed 12 million people a month ago. 

The question whether a patient could potentially erase or edit medical notes was described as a “central issue” which would be discussed during the week. 

Transparency: the final blow to medical professionalism 

Participants were later asked to consider in greater detail the pros and cons of full transparency in health care systems. 

To spark debate among the crowd, a participant representing each side of the argument took to the stage to offer talking points from their side’s perspective. 

The participant arguing for full transparency in health care said there were several ethical, logical and evidence-based arguments to show transparency is essential to professionalism in medicine. 

She argued to make a health care decision, a patient must be well-informed, and information which is deemed essential must be disclosed. 

The participant put forward the point that physicians must be honest with their patients to empower them to make decisions about their treatment. She added health care was most effective when patients were active and engaged. 

The participant arguing against full transparency in health care played the role of a doctor who said, “I have a body of knowledge [patients]don’t have.... I have to be efficient. I must not frighten them. I must not put them at risk.” 

The participant against full transparency also put forward the case that a transparent, open notes system could put patients at risk of having their data being hacked. 

After each participant had offered their opening arguments, both were given a chance to provide supplementary points. 

The participant arguing for full transparency said there were ways to implement transparency which would give clinicians more time. 

In response, the participant against full transparency said the arguments of investing now and receiving a pay-off later had all proven to be in vain. 

Participants were split into two groups and were asked to consider more arguments for either side. One-half of the room would argue for full transparency, the other half would argue against. 

There were contrasting views as to whether transparency could move health care workers toward professionalism. While someone arguing for full transparency suggested it could, another participant said professionalism was earned in a different manner. 

There was also a difference of opinion when it came to the matter of accountability. The participant playing the role of the doctor against full transparency said he would be protecting his patients more so than anyone else, as they wouldn’t be held accountable for the medical notes. 

This argument was countered with the claim that patients had to be accountable for their health, absolving them off that was not good for them or their clinician. 

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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