These days, the conventional wisdom is that sharing health data with patients increases their engagement, which then improves their health. And certainly, that may well be the case. I can tell you that when one of my doctors refused to share lab data until he reviewed it, I chewed his practice manager out. (Not very nice, I realized later.)
Still, I was intrigued by a story in the Washington Post challenging the idea that sharing test results is always a good idea. The story argues that in some cases, sharing data with patients lead to confusion and fear, largely because the patient usually gets no guidance on what the results mean. They may not be prepared to receive this information, and if they can’t reach their doctor, they might panic.
According to a source quoted in the Post, virtually no one knows what the actual benefits and risks are associated with releasing test results. “There is just not enough information about how it should be done right,” said Hardeep Singh, an associate professor at Baylor College of Medicine who studies patients’ experiences in receiving test results from portals. “There are unintended consequences for not thinking it through.”
Despite these concerns, some healthcare providers have decided to release most test results, gambling that this will pay off over the long-term. One such provider is Geisinger Health System. Geisinger releases test results twice a day, four hours after the data is published through a portal. ‘The majority [of patients] want early access to the results, and they don’t want to be impeded,” said Ben Hohmuth, Geisinger’s associate chief medical informatics officer at Geisinger.
Geisinger’s bet may help it avoid needless patient harm. According to a study appearing in JAMA, between 8% and 26% of abnormal test results – including potential malignancies – aren’t followed up on in a timely matter. Giving them this data allows them to react quickly to abnormal test results and advocate for themselves.
It also seems that the Washington Post didn’t take the time to get to know CT Lin, CMIO at University of Colorado Health. He’s done extensive research into providing electronic access to results and other health data. His results are clear and cover the idea that releasing some results is harmful. There are a few results that are good to keep until the provider has talked to the patient. However, he found across a wide range of examples that releasing the results doesn’t cause any of the damages that many imagine in their minds.
Maybe its time for providers to begin studying patient responses to test result access even more. We’re not talking rocket science here. You could start with an informal survey of patients visiting one of your primary care clinics, asking them whether they use your portal and which features they consider most valuable.
If patients don’t rate access to test results highly, it doesn’t mean that you shouldn’t bother making them available. It could be that at the moment, your test results aren’t displayed in a useful manner, or that the patients you talk with dislike the portal overall. We can work to learn this as well rather than imagining some scenario that could go bad. That’s easy in healthcare.
Regardless, the evidence suggests that at least some patients benefit from having this data, especially the ability to ask good questions about their health status. For the time being, that’s probably a good enough reason to keep the data flowing.