One of the big obstacles to the free exchange of health data is obtaining patient consent to share that data. It’s all well and good if we can bring exchange partners onto a single data sharing format, but if patients don’t consent to that exchange things get ugly. It’s critical that healthcare organizations solve this problem, because without patient consent HIEs are dead in the water.
Given these issues, I was intrigued to read a press release from HEALTHeLINK, an HIE serving Western New York, which announced that it had obtained one million patient consents to share their PHI. HEALTHeLINK connects nearly 4,600 physicians, along with hospitals, health plans and other healthcare providers. It’s part of a larger HIE, the Statewide Health Information Network of New York.
How did HEALTHeLINK obtain the consents? Apparently, there was no magic involved. The HIE made consent forms available at hospitals and doctors’ offices throughout its network, as well as making the forms available for download at whyhealthelink.com. (It may also have helped that they can be downloaded in any of 12 languages.)
I downloaded the consent form myself, and I must say it’s not complicated.
Patients only need to fill out a single page, which gives them the option to a) permit participating providers to access all of their electronic health information via the HIE, b) allow full access to the data except for specific participants, c) permit health data sharing only with specific participants, d) only offer access to their records in an emergency situation, and e) forbid HIE participants to access their health data even in the case of an emergency situation.
About 95% of those who consented chose option a, which seems a bit remarkable to me. Given the current level of data breaches in news, I would’ve predicted that more patients would opt out to some degree.
Nonetheless, the vast majority of patients gave treating providers the ability to view their lab reports, medication history, diagnostic images and several additional categories of health information.
I wish I could tell you what HEALTHeLINK has done to inspire trust, but I don’t know completely. I suspect, however, that provider buy-in played a significant role here. While none of this is mentioned in the HIE’s press release or even on its website, I’m betting that the HIE team did a good job of firing up physicians. After all, if you’re going to pick someone patients would trust, physicians would be your best choice.
On the other hand, it’s also possible patients are beginning to get the importance of having all of the data available during care. While much of health IT is too abstruse for the layman (or woman), the idea that doctors need to know your medical history is clearly beginning to resonate with your average patient.