John Halamka’s blog had a guest blogger, Amy Stiner, who related her story of a tortuous, difficult, painful path of getting her son’s medical information relayed from health system to health system as they moved around the country. This story is all too common and relatable. Among the many striking things in this story is this — even if patient-facing APIs lead to an “HIE of One” scenario, health systems must not absolve ourselves of the obligation to do a better job of information exchange. This woman endured much difficulty in trying to assemble and send her son’s records to the new or next provider of care. But, even if this part were “easy,” why should it be her responsibility to do this?
Yes, it is a moral obligation and a huge benefit to care to allow patients access to their health data. We should be going full steam ahead with implementation of patient-facing APIs and tools to let patients access and use their data.
However, when it comes to creating a functioning healthcare delivery system, health systems cannot rely on patients to solve our problems for us. Health systems cannot rely on each Amy Stiner to find and bring data from place to place, shuttling health information around for us, even if it is done digitally and even if the work effort is much less than it is today.
We must achieve both aims: 1) Enabling patient access to their health data, because they deserve it, and 2) Creating seamless flow of information around the healthcare system, from provider to provider, in the service of providing effective and seamless patient care.