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Biden: Federal Action Needed for Patient Access to Health Data

Joe Biden has published a response to the MyHealthEData Initiative from CMS that calls for better patient access to health data.

patient access to health data

Source: Thinkstock

By Sara Heath

- Vice President Joe Biden is calling on federal health leaders to identify specific strategies for enforcing better patient access to health data.

In an op-ed published this week in Fortune, the former leader of the White House Cancer Moonshot and current Co-Chair of the Biden Cancer Initiative responded to some of the ideals espoused from CMS and HHS at HIMSS18.

At the event, CMS Administrator Seema Verma introduced the MyHealthEData Initiative, which served as a promise for all Medicare and Medicaid patients to be able to access their own health records. The announcement also included calls for health IT developers to support interoperability for patient data access and for health payers and other industry leaders to grant better patient access to their health records.

“Unfortunately, the announcement lacked many specific actions to effectively implement the initiative,” Biden wrote in the article. “I agree with the administration’s stated goals, but real action is needed—and now is the time.”

The end goal is one most within the healthcare industry can support – patients should have access to their health data, Biden asserted. But the proposal from CMS is short on details about how to further support that vision.

READ MORE: CMS Initiative Aims to Improve Patient Access to Health Data

“These health data issues are not new and we must all get serious and specific about the details to take action in the near term,” Biden pointed out. “We have now had nearly a decade to examine the consequences of how the electronic health record systems have been deployed. The industry has had ample opportunity to voluntarily address the issues of interoperability and putting data in patients’ hands, and they have not done so.”

Biden identified four specific action plans that CMS and other related stakeholders should adopt.

First, HHS should enforce a 24-hour timeline to which healthcare organizations must adhere for patient data access requests. HHS can enforce this under the 21st Century Cures Act.

Second, the Center for Medicare and Medicaid Innovation (CMMI) should work on a centralized patient portal tool that would aggregate all patient data from disparate providers into one, patient-facing electronic record.

“This portal should be dynamic and allow for all providers for an individual patient to input and validate data in one place, to reduce confusion and duplication and eliminate unnecessary procedures,” Biden explained. “This goes beyond a digital download of a patient’s record and creates a new way for patients and their physicians to communicate and make decisions.”

READ MORE: Recapping HIMSS18 Patient Engagement Technology News

Next, HHS should reinforce its agreements with EHR vendors involved in Sync for Science, a government initiative that allows patients to share their own electronic health data with medical researchers.

Finally, Biden called on the National Cancer Institutes to create an online digital trust for patient data.

“This would allow not just piecemeal sharing of incongruent data sets but would require real agreement to share comprehensive patient data that could make a difference for research,” Biden explained.

Biden’s recommendations operate on the assumption that patients must be the arbiters of their own health information. Healthcare organizations should share personal medical records with patients automatically, akin to a monthly bank statement, Biden argued.

Bridges between individual data repositories need to be strengthened. Currently, some projects exist for collecting patient health data for research purposes. But these projects often perpetuate siloed patient data, which can hinder the overall research process between different research teams.

READ MORE: What are the Top Pros and Cons of Adopting Patient Portals?

Last, more infrastructure must be dedicated to notifying patients and providers of potential clinical trials. Patients currently have only a limited view of these clinical trials, meaning that the medical research is skewed toward patients with the benefit of finding trials.

“Patients should be alerted that they potentially qualify for a trial based on the data already contained in their records,” Biden explained.

To be clear, Biden does not fault Verma’s overall sentiments with respect to the MyHealthEData Initiative. It is inarguable that patients should have access to their own medical information, and that breaking data siloes will improve patient health, Biden agreed.

But better direction toward achieving that goal is necessary, Biden stated. During his time in office, Biden said CMS and HHS worked to develop programs with better patient health data access as an end goal. Now, it is up to current policymakers to enforce working programs and to develop specific initiatives to overcome program pitfalls.

“There is so much promise, not only in what we can accomplish in the fight against cancer, but in so many areas of health and medicine, but we need to get out of our own way and focus on patient outcomes as our north star,” Biden concluded. “And we need to develop the right systems to get us there.”

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