I’ve been reflecting on a recent article in Politico in which Greg Simon, president of the Biden Cancer Initiative, recalled an exchange between former Vice President Joseph Biden and Epic CEO Judy Faulkner. The topic was access to patient records. According to Simon, Faulkner said, “Why do you want your medical records? They’re a thousand pages of which you understand 10”. To which Biden replied, “None of your business. If I need to, I’ll find someone to explain them to me and, by the way, I will understand a lot more than you think I do.”
I began by reminding myself it’s a good idea to take second-hand reports like this with a grain of salt. But, this story does provide an interesting window into a number of pressing issues.
There’s not much debate that, with few exceptions, a patient’s medical information belongs to them. This is a fundamental right in a free society. I agree with Biden that he has a right to all 1,000 pages of his record, and it’s nobody’s business why. Implied in that right is the ability to access the information in a reasonable and secure manner. Patients also need ready access to trusted references that help them understand their information and make wise choices.
It’s also true that the information that is important to the patient at any given moment is a subset of all the information in their record. Faulkner’s response can be interpreted in different ways. I think she was trying to point out the importance of providing information in a way that is useful and actionable. Otherwise, the “needle” of valuable information may be lost in a “haystack” of irrelevant data. We can all agree on that.
The needle in the haystack problem is very real and also applies to clinicians, administrators and everyone else who plays a role in healthcare. One of the most common complaints I hear is that EMRs (electronic medical records) do not produce the concise, actionable narratives that busy clinicians crave. This is true both when working within their own EMR and when they receive reports from the outside world. Things like discharge summaries, consultation reports, and patient instructions are often bloated and marginally useful.
Another interesting aspect of the Biden-Faulkner exchange is Biden’s assertion that patients understand more than they get credit for and can seek assistance when needed. In my experience, this is true. Clinical medicine grows ever more complex and evidence-based, but will remain, for the foreseeable future, a mix of science and art. Judgement and wisdom often come into play. The best outcomes occur when informed and engaged patients partner with knowledgeable, sensitive and wise medical professionals.
The path forward and the most productive way to think about this exchange is not as an “either/or,” but as a “both/and”. We need technology that lets EMRs exchange 1,000 pages, 10 pages, or the date of the last flu shot, securely, in real-time, and across disparate platforms and applications. This technology should be flexible and agile. It should deploy and scale quickly. Since we don’t have time to reinvent the wheel, this tech should already be well-proven in other settings.
Of course, I am being a tad facetious here. The whole world has moved to application programming interfaces (APIs). It’s past time for all stakeholders in healthcare, especially EMR vendors and health systems, to do the same. If we follow the path blazed by the rest of the digital economy and widely adopt APIs, then the answer to our “both/and” challenge will be: “Yes we can.”