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How do we enable patients to own their data?

In a recent New York Times op-ed, The Health Data Conundrum, authors conclude:

We need to move on from the days of health systems storing and owning all our health data. Patients should be the owners of their own medical data.

I agree. Over the last decade, our industry has identified many flaws with approaches where organizations own patient data. This became clearer, years ago, as providers launched health information exchanges (HIEs) and Regional Health Information Organizations (RHIOs). Patient consent was messy, and combined data was often confusing and inaccurate.

The easiest way to resolve these issues is to put patients in charge of their data. Organizations don’t have to worry about rights when patients transport and control data. When patients own their records, they can quickly notice and correct errors in the electronic health record (EHR), such as outdated medications, allergies or problems. Some things we can do to help hasten patient ownership of data include:

1)     Explain the full advantages more clearly to patients.

People don’t understand the full potential of owning their data, or what a portal can really do for them. For example, someone recently asked me, “My doctor wants me to sign up for a portal so I can send secure messages. Why would I want to do that?” I explained that she could email questions about lab results or her child’s symptoms directly to her provider, bypassing several rounds of phone tag. Promotional efforts only encourage enrollment when patients understand the full benefits of participating.

Also, consider the age of your audience when explaining the benefits. You might assume that tech-savvy millennials are the easiest to engage with online solutions, but people over the age of 55 are the most active users in Allscripts FollowMyHealth® patient engagement platform. Why? These patients often have multiple providers and conditions to coordinate, and they appreciate the benefits of a universal health record.

2)     Open up those notes.

While patients have the right to access their entire record, we often hear that the most engaging sections include notes from physicians. OpenNotes research found that when physician notes are available, patients reported feeling more in control of their care and better medication compliance. Patients may see the doctor for just a few minutes during a visit, but the notes more fully document the insights and work that happens after that face-to-face time.

One side note – we use a lot of jargon in health care which can lead to misinterpretation of notes. For example, the common industry abbreviation for “shortness of breath” as “SOB” may not carry the same meaning for patients. But some patient engagement platforms, such as FollowMyHealth, enable providers to only release notes after a specified date, giving organizations the opportunity to release understandable information to patients.

3)     Use an EHR-agnostic solution.

Not all patient portals embrace the patient-ownership concept. Our FollowMyHealth patient engagement solution enables patients to own their data, because we integrate with any EHR – not just Allscripts – and aggregate the information into one login for the patient. Each patient owns his or her universal record in a separate, secure encrypted piece of the cloud. This approach is vastly different from the “silo” approach that other vendors in the industry use.

Most importantly, when patients own their data, they are more likely to take more responsibility for their health. We must continue to encourage this engagement.

Comments 1

  1. Tina Heob 02/02/2017

    Very informative article Kimmie Kaye! We are so proud of you!

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