Every state is facing its own set of difficulties getting coronavirus vaccines into people’s arms and the generic answer will be the supply is limited. But the challenges playing out in real-time are not that unique and they will not evaporate when the vaccine supply increases. The lack of coordination, supply management, data collection, reporting and equity are a familiar movie script, if you could manage to reserve an online ticket to that movie. Some of the players have changed but the plot is as familiar as the early days of COVID testing.
And they remind us again that years of underinvestment and failure to modernize the nation’s health information infrastructure have left us unprepared to collect, report, and share health data effectively hindering a rapid and equitable vaccine delivery system. American ingenuity in developing and deploying technologies for people to use in retail, travel, and banking has bypassed health care and public health.
Admittedly, public health falls mostly to the states, making conditions ripe for a disconnected and fragmented approach to any national crisis. But years of earnest efforts to standardize vaccine registries have fallen short leaving a variety of state agencies, pharmacies, and startup companies to build their own appointment scheduling systems that do not link to each other, to individual medical records, or to public health registries for reporting purposes. Much of the pandemic year has been spent building new systems without improving previously developed ones.
While some states have sophisticated health information exchanges most do not and few are adequately integrated with the public health systems making it difficult to quickly answer important questions, such as who is getting tested or vaccinated, when and where that is happening, who has developed side effects and whether the vaccine is active against new variants. It is difficult in most states to know that vaccines are being distributed equitably and fairly; or to enable people to find or register for first appointments or schedule second doses if needed.
Even in places where data systems are functioning better and sharing information, we are not collecting nearly enough data. This makes it hard to get vaccines where they are most needed or identify which communities are at highest risk. Even states that do report data by race and ethnicity vary in what they are reporting.
As vaccine supplies increase, more patients will seek shots via a doctor’s office or local pharmacy – the usual channels. If emerging variants create a need for booster shots, will data systems be up to the challenge?
Several steps could prepare us moving forward.
Some funds from the new American Rescue Plan could support existing data systems so they track and report vaccinations of the populations they serve. The federal infrastructure package now before Congress could help too by bolstering state data sharing efforts. Insurers too can use their digital capabilities to prompt and assist their own members to get vaccinated. New federal rules also allow insurers to start exchanging data via designated data exchange portals.
Over the long term, Congress should take specific actions to vastly improve our digital information systems to better plan for future pandemics and emergencies:
First, empower the Department of Health and Human Services to develop and implement an interoperable and secure public health information system that would enable a rapid and secure exchange of standardized electronic health information between public health departments, labs, health systems, clinicians, and drug and device makers.
Second, create and regularly test a national preparedness information and surveillance system that tracks in real-time the health effects of a public health crisis, including the presence of disease and what is needed to manage it. This can be done by facilitating public-private collaborations and increasing coordination among hospitals, community health centers, clinics, suppliers, and public agencies. This kind of system could help track the effectiveness of the vaccine and variants and virus mutations.
Third, require health systems, pharmacies, suppliers, and manufacturers to collect and share relevant data with local, state, and federal governments during a national emergency. Data should include information on race, ethnicity, age, gender and zip code.
We have learned multiple lessons from this crisis and seen throughout how important data are to our lives, our health, and our ability to recover. Investing in a modern interoperable health information infrastructure will pave the way to a healthier nation and world, both in times of crisis and in peace.