Why Should Patients Control Their Health Data? Here Are A Few Ideas.

Posted on September 29, 2017 I Written By

Anne Zieger is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she's served as editor in chief of several healthcare B2B sites.

Lately, healthcare organizations have begun working to give patients more access to their personal health data. They’ve concluded that the more control patients have, the more engaged they become in your care, which in turn leads to better outcomes.

But patient engagement isn’t the only reason for giving patients the keys to their PHI. In fact, organizational control of patient health data can cause problems for everyone in the healthcare data exchange chain.

An item found on the Allscripts blog does a nice job of articulating issues that can arise.  According to the blog item, those issues include the following:

  • The patient is in the best position to address inconsistencies in their medical record. For example, if one doctor diagnoses the patient with asthma, then another physician conclusively demonstrates the patient is not asthmatic, the patient can reconcile the two physicians’ conclusions.
  • Patients have a better overview of their care than most doctors. When a chronically ill patient sees multiple clinicians, their impressions may conflict with one another, but the patient can provide context on their overall conditions.
  • If a patient consents to multiple uses of their health data, and the consents seem to be in conflict, only the patient can articulate what their intentions were.
  • If the master patient indexing process generates a false match with someone else’s records, the patient will recognize this immediately, while physicians may not.
  • Giving patients control of the record allows them to decide how long those records should be maintained. Otherwise, HIEs — or other entities not bound by record retention laws — might destroy the data prematurely.
  • When patients have control of their data, they can make sure it gets to whomever they choose. On the other hand, patient data may not make it to other care settings if providers drop the ball.

To be sure, delegating control of their PHI to patients can go too far.

For example, if they’re transmitting most or all of their health data between providers, it could pose a significant administrative burden.  Patients may not have the time or energy to route the data files between their providers, assure that data has been received on the other end and make certain that the data was formatted in a way their clinicians can use.

Also, if the patient is chronically ill and sees multiple providers, they may end up having to manage a large body of data files, and not everyone can do so effectively. Ultimately, they may get too overwhelmed to send their records to anyone, or send the wrong records, which can create complications of its own.

Still, on the whole, healthcare organizations are giving patients more control of their health data for good reasons. When patients take responsibility for their health data, they’re far more likely to understand their condition and take steps to address problems. Establishing a balance between patient and provider control may be tricky, but it can and should be done.