In our last article, we talked about how healthcare interoperability is insanely complex. In it we shared some of the technical nuances of keeping health data synchronized between different software systems using an API. As a follow up to that article, this article will look at a small but extremely important human nuance that makes healthcare interoperability so complex.
This insight comes from a blog post called “Problems with Interoperability and Coordinated Care.” It’s written by a patient who has a challenging mix of chronic conditions, medical trauma, and mental health issues.
The patient acknowledges that she started off being a big proponent of healthcare interoperability. Who wouldn’t want to not have to to “fill out those long intake forms”? However, she also discovered some challenging realities she faced when she as the patient wasn’t in control of how, when, and where her health data was being shared.
You should read the whole blog post to get all the details, but here are some high level highlights.
The first high level message I took away from this patient’s story is that the patient needs to be at the center when discussing healthcare interoperability.
There’s a lot more on the history of interoperability but for this thread, the 2 main points are
* There are movements to coordinate care that include interoperability, and
* The government would like to stop “information blocking” and go forth with interoperability.
Both of these things sound good in theory but have adverse consequences for patients, who are not put at the center of this conversation and are given no control over how and what information is shared and with whom.
I think many people that are involved in interoperability in healthcare think that they’re putting patients at the center of care. The problem with this for many is that they (and sometimes I’m included in this) have a myopic view of how what they’re doing will impact patients. They’re so laser focused on the benefits to the patients they know and understand that they don’t spend enough time understanding the patients that healthcare interoperability can impact negatively.
Of course, this brings up a really challenging situation. What do we do if implementing interoperability in healthcare would save a thousand people’s lives by having the right data in the right place, but that interoperability would also damage hundreds of people’s lives as is described in this patient’s post? Should we still do it? This is a classic question that philosophers have grappled with for years. Plus, are we sure that interoperability will help thousands and damage hundreds or is it the other way around? But, I digress…
Maybe that’s not really a fair question either. The better question might be if there’s a way to facilitate interoperability in healthcare in a way that helps a large group of people without harming another group of people? While I’m certain we’ll never get this perfect, understanding how healthcare interoperability can hurt patients is the first step to achieving this goal. This means involving a wide group of patients in our interoperability efforts so we ensure that as many as possible benefit from the changes and we avoid hurting others in the process.
One problem is that the current HIPAA regulations don’t do a good job of addressing this as was described by the patient mentioned above:
Again, HIPAA regulations state that people who are not involved in your care should not get access to your information. But HIPAA also does not require a full accounting of disclosures for every person/entity who gets your health information and implementing audit controls is not mandatory.
There is a lot to process in this, but empowering the patients to get access to their health data and informing them when their data being accessed seems like the right direction.
I know many people suggest that patients should be the “HIE of One” and other patient driven interoperability initiatives. While I agree that those patients that want to do this should be able to, it’s also not a real solution to the healthcare interoperability problems. Most patients won’t be the HIE of their own health information even if we made it easy for them to do so. We need both options. Access to all their health data for patients who want it, but healthcare interoperability that improves patient care for those who think their health data is already between organizations and are fine with that sharing. Plus, sharing controls for those patients who want to restrict access to their health data.
Of course, that’s really easy to type, and much harder to implement across hundreds of software and thousands of systems. In fact, that’s kind of the point of this article. Healthcare interoperability is extremely complex. I’m still a proponent of interoperability in healthcare which can improve care and lower costs for a lot of patients. However, let’s also not forget these sobering words from the patient mentioned above:
Interoperability is great until you realize that the patient has no control. No control of what is in their chart. No control over how and with whom it’s shared. No control to get out. No control to stop the flow of information they trusted to be held in secret.
Interoperability is great if your providers are all kind and compassionate, if you don’t have stigmatizing illnesses, if you don’t have abusers that can gain access to your information. It’s a great tool to coordinate care, but not for everyone.