4 Ways We Are Democratizing Health Data

Published August 16, 2021

Author: Lachlan Tidmarsh

Lachlan TidmarshA patient leaves yet another doctor's office, arms full. They carry cases heavy with binders: eight years of medical records that have traveled with them across the country, growing heavier with each appointment.

Soon they will receive a diagnosis that will give them their life back: a rare but treatable thyroid disease.

Most of us are lucky enough that we don't have to haul even one binder from doctor to doctor. But when we're faced with filling out a new patient form, or if we become caregivers to our aging parents, the burden of medical records becomes more palpable. Unlike most other types of information—emails, bills, bank statements—medical records previously were not designed to travel with us in our pockets. Nor have they easily and securely passed from one person or provider to another despite efforts for the past decade or more to digitize patient records starting with the HITECH Act of 2009. We should not have to wait another decade for seamless consumer access to their records.

This notion of seamlessly accessing and transferring data is known in the industry as interoperability. It's a foundational point of discussion in the healthcare system today as providers, health insurers, private companies and the public sector are all continuing to work toward a common vision of data transparency, cost efficiency, ease of access and security—all of which can improve the patient experience.

The future state of interoperability in healthcare is one in which health records move seamlessly with each patient, securely from doctor to care manager to insurer. Patients can, without difficulty, understand, analyze, track and manage their healthcare needs on their phone. Creating a seamless and secure interoperable network of data—that is accessible and controlled by the patient—is something we call the democratization of data.

One of the most important steps to creating this future state of secure and easy-to-access digital health records is standardizing health records into one universal format. Historically, what makes this information difficult to accurately share with the patient and, by extension, any other party is lack of data standardization and interoperable infrastructure to seamlessly exchange data.

In the past year alone, we've made significant strides toward this vision. The Blue Cross® and Blue Shield® (BCBS) system has been working collaboratively with more than 60 external organizations across the country, big and small, to help break health records out of the four walls where they are stored today. Four critical ways this is being done include:

  • Da Vinci Project - A founding member of this work, the Blue Cross and Blue Shield Association (BCBSA) is working alongside other public and private-sector organizations to enable standardized data collection and exchange across the healthcare system. This work will help support value-based care delivery and enable greater patient care coordination.
  • CARIN Alliance - As a member, BCBSA is helping to advance the ability for consumers and their authorized caregivers to gain digital access to their health information through mobile devices and apps.
  • Gravity Project - This multi-stakeholder effort aims to identify coded data and value sets so that social determinants of health data documented in patient EHRs is made accessible and converted to useful information to track public health problems, identify underlying causes and design culturally appropriate solutions.
  • Person Matching Index - The BCBS Master Member Identifier (MMI) matching algorithm links a single person to their data across the BCBS System with 99.5% accuracy to ensure accurate, interoperable data exchange. So, for example, when we build a patient profile based on their health history and then the patient gets a new job and moves their health insurance coverage to another BCBS company, their data easily travel with them for a more seamless experience.

This work is about much more than operational ease. It is designed to change the way people engage with their health. Through interoperability, we can begin storing and securely sharing our medical records from consumer devices. Instead of filling out medical history forms in waiting rooms or toting our records from provider to provider, we will share this information with the tap of a finger.

Interoperability will also support the patient-centered model of care that rewards quality and long-term outcomes known as value-based care. By getting a holistic, 360-degree view of their patients, doctors and other healthcare professionals can save time and make more informed decisions about their health and well-being. For example, helping to avoid asking the same questions or performing unnecessary tests.

The democratization of data requires significant transformation within the infrastructure of the healthcare ecosystem. It will also require a concerted effort to educate consumers. Just as we had to learn how to manage our 401(k)s when employers started getting out of the pension business, so too will we need to learn how to manage our private health information: When is it safe to share data? Who needs access? We are committed to preparing consumers for this shift as we move closer to the envisioned future.

In the meantime, follow my LinkedIn for continued updates on interoperability in the healthcare industry and explore the ways the BCBS system is supporting this work:


The Blue Cross Blue Shield Association is a national federation of 35 independent, community-based and locally operated Blue Cross and Blue Shield companies that collectively provide health care coverage for one in three Americans.