7 challenges when organizations own patient data

As the healthcare industry shifts to a new mindset – that patients instead of organizations should own their data – we look for examples of this approach in practice.

Editor's Note: This article originally appeared on Allscripts Blog: It Takes a Community10 PatientEngagement2

Baylor Scott & White Health (BSWH) believes patients should have greater responsibility for their own electronic health record (EHR) information, and now enables patients to modify their own records.

BSWH understands that while healthcare organizations do their best to take care of patient data, they generally will not be as successful as the patients themselves.

When healthcare organizations hold the primary responsibility for patient data, patients could encounter the following challenges:

1. Data from different doctors may be conflicting.

For example, one doctor may suspect an allergy and document it. Years later, a second doctor tests and conclusively determines that the patient does not have the allergy. When the patient arrives, unresponsive, in the emergency department, his medical record will show the patient as both allergic and non-allergic.

2. Data may be too overwhelming for doctors to use.

Sometimes there can be conflicting entries from different providers, because no one is managing the patient’s problem list across multiple systems. For example, newborns with heart murmurs often have progressive diagnoses from the hospitalist, pediatrician and surgeon.

3. Consents may be conflicting or impossible to follow.

For example, patients may opt-in and opt-out of two heath information exchanges (HIEs) at the same time…which permission prevails? Or how do HIEs account for states that have different rules for sensitive data, such as a patient’s HIV status?

4. Patient identity may be mismatched.

Master Patient Indexes will match up patient records using selected data elements. Most have multiple mismatches daily. For example, your medical history may be confused with someone else’s. Biometrics can improve this process, but it’s not used widely enough yet.

5. Data may be lost or stolen.

According to a Redspin report, more than 40 million Americans suffered a breach of their personal health information between 2009 and 2014, excluding the breach of 80 million records at Anthem.

6. Data may be destroyed sooner than the patients want.

HIEs are often not subject to record retention laws, so data destruction can happen within two or three years. This approach can be an issue for patients with chronic problems who need information retained over longer periods of time.

7. Doctors may decide not to participate in an HIE because of liability concerns.

Physicians sharing data may be subject to HIPAA or other penalties associated with inappropriate release of patient data by anyone in the data exchange chain. While there are no known court cases yet, it could have a chilling effect on physician data sharing.

What BSWH has learned from letting patients modify their records

BSWH has found that enabling patients to modify their own records has generally been a good thing. The system has about 180,000 accounts on Allscripts FollowMyHealth® patient engagement platform, which has been live for about one year.

Patients can add, delete and change problems, medications, allergies and immunizations. The system will alert primary care physicians when patients make changes. For example, if a patient deletes Lithium, a physician can follow up with a phone call before that patient has a potential crisis.

Here’s what BSWH has learned from opening up the patient records to patients:

· Patients often delete “Morbid Obesity”

· Patients frequently update allergies (both additions and deletions)

· More than 1,000 clinical changes per month are coming in from a base of 100,000 patient accounts

· Early indications are that patients are pleased to have control over their information

Ultimately, BSWH believes this approach will lead to better patient care. Patients responsible for their data may also feel more responsible for their health care.

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