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Giving Patients Test Results: Is It A Good Idea?

Posted on May 2, 2018 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

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.

E-Patient Update: Give Us Patient Data Analytics

Posted on March 24, 2017 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

The other day, I sat down with my husband to check out the features of his new connected glucose monitor. My husband, a Type 2 diabetic, had purchased the Accu-Chek Aviva Connect, which when synched with a computer, displays readings data on the web.

After synching up his results with his desktop via Bluetooth, he entered a web portal and boom! There was a two-week history of his readings, with data points organized by what times they were taken. As part of its dashboard, the portal also displayed the highest and lowest readings taken during the time period, as well as citing the average difference between high and low readings (the size of the delta).

By going over this data, we were able to learn a few things about his current disease management efforts. For example, we saw that virtually all of the highest readings were taken between 6PM and 9PM, which helped him identify some behaviors that he could change.

Of course, for the professionals reading this, none of these features are all that impressive. In fact, they’re practically kid’s stuff, though I imagine his endocrinologist will get at least some benefit from the charts.

But I’m here to tell you that as patient data management goes, this is off-the-charts cool. After all, neither of us has had a chance to track key health metrics and act on them, at least not without doing our own brute number crunching with a spreadsheet. As you can imagine, we greatly prefer this approach.

Unfortunately, few patients have access to any kind of analytics tools that put our health data in context. And without such tools most of us don’t get much benefit out of accessing the data. It’s time for things to change!

Upgrade the portal

One of the most common ways patients access their health data is via a provider portal. Most commonly, portals display the results of diagnostic tests, including lab tests and the text of imaging results.

Sharing this data is a step in the right direction, but it’s not likely to empower patients on its own. After all, even an experienced clinician would find it difficult to make sense of dozens (or in the case of chronically-ill patients like me, hundreds) of test results.  Even if the portal provided educational material on each test, it may be too much information for a patient to absorb.

On the other hand, patients could do a lot with their data if it was displayed in a patient-friendly manner. The possibilities for improving data display are manifold. They include:

  • Displaying tests relating to specific concern (such as thyroid levels) in sequence over time
  • Offer a chart comparing related data points, such as blood pressure levels and cardiac functioning or kidney functioning paired with blood glucose levels
  • Display only outlier test values, along with expected ranges, and link to an explanation of what these values might mean
  • Have the portal auto-generate a list of questions patients should ask their doctor, based on any issues suggested by test data

By provider standards, these displays might be fairly mundane. But speaking as a patient, I think they’d be very valuable. I am compulsive enough to check all of my health data and follow up with questions, but few patients are, and any tools which helped them decide what action to take would represent a big step forward.

It would be even more useful if patients could upload results from health bands or smartwatches and cross-reference that data with testing results. But for the short term, it would be enough to help patients understand the data already in the system.

Giving patients more power

At first, some providers might object to giving patients this much information, as odd as it may sound. I’ve actually run into situations where a practice won’t share test data with a patient until the doctor has “approved” the results, apparently because they don’t want patients to be frightened by adverse information.

But if we want to engage patients, providers have to give give patients more power. If nothing else, we need a better way to look at our data, and learn how we can respond effectively.

To be fair, few providers will have the resources in-house to add patient data analytics tools to portals. Their vendors will have to add upgrades to their portal software, and that’s not likely to happen overnight. After all, while the technical challenges involved are trivial, developers will need to decide exactly how they’re going to analyze the data and what search capabilities patients should have.

But there’s no excuse for letting this issue go, either. If providers want patients to engage in their healthcare process, helping them understand their health data is one of the most important steps they can take. Expecting patients to dive in and figure it out themselves is unlikely to work.