Industry Voices—Personal health records are a linchpin to COVID-19 strategies

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By enabling patients to maintain their health records on their mobile device, pre-existing conditions can be verified for vaccination eligibility, and COVID-19 health status and vaccination records could ultimately be shared with our doctors, health plans, and universities. (Getty/marchmeena29)

COVID-19 has upended the way we work and live, creating an immediate need for digital tools as companies across all sectors and regions accelerated their digital transformation efforts and moved their products and services online.

Across all industries and sectors, organizations have adapted their business and digital strategies at record speed. Analyst organizations have suggested that from a business perspective, we’ve reached a tipping point of historic proportions, advancing the digitization of customer and supply-chain interactions and their internal operations by three to four years.

It is - ironically - the health sector where a fundamentally needed digital transformation has not happened. Data interoperability—the ability of data to flow from system to system—remains a point of friction for health and public health and will continue to stymie COVID-19 response unless addressed.

When care delivery systems are upended as they have been since the pandemic, people may need to seek alternative care providers. Perhaps their doctor was an easy bus ride away but now riding public transit is risky, or they need to go to urgent care when they are out of town. To optimize and maintain continuity of care, care providers need access to the person’s health records.

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Although Americans have had the legal right to obtain a copy of their personal health information for two decades, patients have long struggled to gain access to their own medical records in a format that is meaningful and easily accessible. This is because many patient records are controlled by healthcare organizations and traditionally live in siloes that prevent physicians from sharing critical health information. Patients have to wrangle reams of paper from various visits, sometimes in stacks of back-breaking binders, just to get medical records from a specialist to a general practitioner.

In the COVID-19 era, this approach is woefully out-of-date. In fact, if most of us had to go to a new provider today because of the challenges of the pandemic, our records wouldn’t be transferred, and it would be extremely difficult to bring them along for ourselves.

The Department of Health and Human Services (HHS) Office of the National Coordinator for Health Information Technology (ONC), along with the Centers for Medicare & Medicaid Services (CMS), issued two new rules to come into force in April 2021, designed to improve the ability of consumers to access their health data. One rule requires healthcare organizations to make health record data electronically available via widely used technical standards. The other prohibits “information blocking,” where organizations place undue practical, cost, and technical barriers to the sharing of health data.

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There are very tangible near-term benefits of more open access to our own health data. By enabling patients to maintain their health records on their mobile device, pre-existing conditions can be verified for vaccination eligibility, and COVID-19 health status and vaccination records could ultimately be shared with our doctors, health plans, and universities to ensure that employees and students can get back to work and school safely during the pandemic.

Access is just the tipping point

The benefits go well beyond COVID-19. Personal health records access will make it possible for consumers to take full advantage of the wide range of health, fitness and lifestyle apps of their choice to better integrate and improve their healthcare experiences. Some apps offer guidance for managing rare diseases, for example, while others match up patients with clinical trials of experimental drugs. Fitness-minded consumers can use multiple apps to track their workouts, and then pull the data into general storage apps such as Apple Health and CommonHealth, so they can share the information with their physicians.

And yet we’ve barely scratched the surface of what personal health records can offer when it comes to the betterment of human health. Public/private partnerships and cross-industry collaboration are needed to build a trustworthy ecosystem in which people can use the apps of their choice to store and manage their personal health information. Such portability of personal health records will be the tipping point for a broad digital transformation that is sorely overdue in the health sector.

The new ground rules for health data interoperability are a paradigmatic shift in how Americans can access and share their own health information. Starting April of 2021, when the pandemic will not yet have fully abated, this digital transformation will be a linchpin of the strategy for COVID-19, the next pandemic, and an overall national strategy that places people at the center of health data interoperability.

JP Pollak, Ph.D., is the co-founder and chief architect of the Commons Project. Ida Sim, M.D., Ph.D., is a professor of medicine and co-director of Informatics and Research Innovation at UCSF’s Clinical and Translational Sciences Institute and a trustee of the Commons Project.