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Fragmented health data and personalized medicine: What to do?

Fragmented health data and personalized medicine: What to do?
07 July 2017


Patient Portal

Patient portal is essential for patient engagement and patient engagement is integral to successful healthcare management. Giving patients access to their own health data means that doctors’ practices and hospitals can prioritize care for those with more pressing concerns. However, even with the mandated Meaningful Use requirements, the technology is not used to its full potential, and that negatively affects both hospitals and doctors.

One of the biggest contributing factors to patient portal engagement (or lack thereof) is a distinct absence of interoperability between practitioners’ EHR – each system remains siloed and data cannot be transferred easily.

Since the advent of “Obamacare” and the mandated use of “certified” EHR systems, the majority of healthcare consumers have been exposed to a patient portal. However as many of these consumers are aware, each healthcare provider or facility gives them access to the medical records for the visits or procedures done in that particular provider’s facility.

Why is that not enough?

Last month I visited five separate doctors for a minor problem: “a stye in the eye.” I visited an ophthalmologist who gave me referrals to a glaucoma specialist, a plastic surgeon and an optometrist. During the same period, given that I was already in “doctor mode,” I decided to get my annual checkup.

Each of these providers have a different EHR system and patient portal. I could not get a holistic view of my entire medical/health records, for obvious reasons. Therefore each provider I visited had to redo many of the same procedures, or I had to spend a lot of time collecting the information myself and submitting them to the new provider.

My recent experience is not to imply that efforts are not being made to make health data interoperable.

The government mandated a standardized format like C-CDA in 2012. The Direct Project establishes documentation standards that make data transfer easier and faster. Alliances, like Commonwell and Carequality, are being cobbled together to pool and share health records .

But here’s the thing: these efforts are slow and painstaking. Vested interests are pulling in different directions and costs for accessing or sharing these records are not affordable. There is much work to be done if we are to arrive at a coordinated, free-flow of health records.

In an era where almost everyone with a smart phone has increasing access to and use of health apps we no longer have to ask if consumers will participate in their own healthcare management. What they (and I) need, is a meaningful and usable way to manage health records.

Why is it that these portals cannot exchange information to an aggregator like where I can, well, aggregate my medical/health records and get a holistic view of my health?

Patient involvement and communication with their provider helps foster preventative care rather than reactionary care. For instance, according to healthcareDive, “patient involvement in reconciling their medications could save millions spent on lack of adherence, medical errors or poor outcomes from unintended drug interactions… Doctors are also more likely to be alerted to post surgical complications or other concerns and intervene before the patient winds up in the [emergency room].”

Most current, siloed systems meet the requirement of the law: they provide patients access to their health records. But do they address the spirit of the law? Is the current situation not similar to the blind men and an elephant? In the age of personalized medicine: how can we advance wellness with only partial health data?