Hospitals not making patient-controlled records a priority, Boston Children's Hospital directors say

The researchers say technologies exist and the benefits are huge. But the incentives and will to make it happen are missing.
By Bernie Monegain
10:38 AM

Researchers at Boston Children's Hospital are pressing for the healthcare industry to give patients control of their data.

Kenneth Mandl, MD, director of Boston Children's Computational Health Informatics Program, or CHIP, and Isaac Kohane, MD, a member of the CHIP faculty and chair of the Department of Biomedical Informatics at Harvard Medical School, outline their case in The New England Journal of Medicine.

The researchers argue that the technologies exist, demand is ripe and the benefits could be immense. But the incentives and will to make it happen are missing.

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Mandl and Kohane point to the history of the movement to develop personal health records – repositories in which patients can store, track and manage their own health data. They also note barriers to widespread adoption, including the industry's move to provider-based electronic health records and associated patient portals.

"EHRs are limiting in two ways," Kohane wrote. "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, making it difficult for patients to share it, seek second opinions or contribute their data to clinical studies."

"Since 1996, federal regulation defining a patient's right to health data have failed to ensure access," adds Mandl. "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 healthcare system."

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It's not the first time these researchers have pointed to the flaws associated with EHRs. In another New England Journal of Medicine article, "Escaping the EHR Trap – The Future of Health IT," published in June of 2012, they made similar arguments:

"It is a widely accepted myth that medicine requires complex, highly specialized information-technology systems. This myth continues to justify soaring IT costs, burdensome physician workloads, and stagnation in innovation – while doctors become increasingly bound to documentation and communication products that are functionally decades behind those they use in their "civilian" life.

In their most recent article, they offer several selling-points for a patient-controlled health data which includ3 enabling patients to gather all data from all healthcare encounters in one place, fostering greater coordination in the care multiple providers deliver to each patient, allowing patients to easily donate their data for research purpose, allowing patients to augment their data and correct errors in their health records and supporting the development of intelligent healthcare software or health care apps.

"It's time to re-evaluate what the fundamental architecture of the health care system should look like," Mandl said. "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."

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"EHRs and patient portals were plan B," Kohane added. "We should go back to plan A, which was to create patient-controlled data stores that compiles all pertinent data across a patient's lifetime and is the patient's to share as they see fit."

Mandl and Kohane put forth four steps could result in patient health records. They include  stronger incentives from the Centers for Medicare and Medicaid Services and private insurers for healthcare organizations to provide data to patients, development of uniform public application programming, creation of tools so patients can set permissions and consents for who can access their health data and adoption of rigorous authentication frameworks like those in the e-commerce industry to provide data security and accountability.

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