Researchers Push for Patient-Controlled Health Care Data


Personally-controlled health records have been prevented from adoption due to provider-based electronic health records.

Researchers are pushing for a more beneficial system that promotes a patient-controlled health care data economy.

A current study, which was published in The New England Journal of Medicine by researchers at the Boston Children’s Hospital, suggests that resources exist to transition into a health care information economy, but a lack of incentives prevent this from taking form.

In order to implement a patient-driven information in health care system, researchers suggest 4 steps that have the potential to help construct and push forward this plan.

These steps include:

  • Centers for Medicare and Medicaid Services (CMS) and private insurers providing a strong incentive for health care organizations to supply patients with data
  • Tools that allow patients to give consent for who can and can’t have access to their health data
  • Adopting authentic frameworks that are similar to the e-commerce industry to allow for data security and accountability
  • Developing uniform, standard, public application programming interfaces (APIs) that will push forward the development of data apps for both providers and patients backed by federal health care IT policy

"It's time to re-evaluate what the fundamental architecture of the health care system should look like," said Director of Boston Children’s Computational Health Informatics Program, Kenneth Mandl, MD, MPH. “A patient-controlled record allows each patient to become a health information exchange of one; as data accumulate in a patient controlled repository, a complete picture of the patient emerges."

With personally-controlled health records (PCHRs), individual patients can gather and store all of their data in one place, provide greater corroboration for providers who are giving patients care, easily donate data for research, allow patients to correct any errors found in their health records, and fuel development for health care software and apps.

However, according to researchers, PCHRs are blocked from widespread adoption because of the industry changing to a provider-based electronic health records (EHRs) system, as well as associated patient portals.

"EHRs are limiting in 2 ways," said researcher Isaac Kohane, MD, PhD. "First, they only show the data from one hospital or provider, which is not a complete picture if you see multiple providers at multiple hospitals. Second, the data stay with that hospital, such that patients can't want to share their data elsewhere, easily seek second opinions or contribute their data to clinical studies."

Previously, the Meaningful Use program, which was made up of 3 stages, was put in place to improve health care by adopting the EHR practice. However, this program did not pan out like was hoped, leaving it less successful.

"Since 1996, federal regulation defining a patient's right to health data have failed to ensure access," Mandl said. "Further, hospitals in general do not see having complete patient records as a business priority. We believe the Meaningful Use program would have been more successful if it had rewarded clinicians for storing data in patient-controlled repositories rather than in EHRs that fragment data across the health care system."

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