Data gaps from rapid COVID-19 home tests risk further propagating health disparities
Testing remains critical
As the COVID-19 pandemic enters its third year, rapid at-home COVID-19 tests are becoming an increasingly important part of the return to something resembling life. These tests—yielding results within minutes just as easily as home pregnancy tests — are so vital to the return to normal that the Biden administration has set up a program to distribute 500 million of them free of charge to households across the country. In addition, Health Insurance Companies and Group Health Plans are now required to cover the cost of at-home COVID-19 tests. Many states, counties, and community organizations are making additional free rapid at-home tests available to the public. All these efforts serve one common goal: ensuring everyone who needs a COVID-19 test has ready access. Only time will tell how effective and sustainably these initiatives will prove in increasing equitable access to testing. Safely returning to offices, schools, or other venues will require frequent testing, made possible only through easy, convenient, and ample access to at-home tests. Unfortunately, this access may very well become a significant barrier, particularly for the Nation’s most vulnerable individuals who often lack private health insurance and have thus far born the biggest brunt of the pandemic. Regrettably, vital data gaps mean that we may never know for certain who is left behind in the quest for rapid, free COVID-19 testing.
Despite various programs, access to free COVID-19 home tests may not be equitable.
A myriad of obstacles - big and small, real or perceived - can get into the way of those free at-home COVID-19 tests. Some of the obstacles Maximus has repeatedly encountered when supporting individuals across the country in accessing COVID-19 vaccines and testing appointments, now including rapid at-home tests, include reliable internet access, English language, and computer literacy skills, preferences for text or chat over voice communication channels, concerns about immigration status and legal documentation requirements, time constraints on when during the day access requests can feasibly be made, and stable housing. In addition, blips such as test kits that freeze while left on a porch during winter or remote areas with no COVID-19 rapid tests available at retailers for many miles can create unique testing challenges for individuals. Each of these factors disproportionately impacts individuals from underserved communities and further cement existing health inequities. The way to systematically detect and counteract these inequalities is through data and analytics. However, data from COVID-19 at-home tests are not currently collected and aggregated in any systematic and standardized way, meaning that it remains largely unknown who is being tested with rapid at-home tests and who stays left behind.
Options for collecting data on COVID-19 at-home tests are slowly improving – but leveraging that data to further health equity is still a challenge.
Although solid data on how many COVID at-home tests are performed each week and by whom are missing, a couple of encouraging developments give a reason for hope. In recent weeks, state and local jurisdictions in several places across the country have started to set up mechanisms for individuals to voluntarily report the results of COVID-19 home tests where until very recently, no such data collection options existed. In addition, a few home tests come with a software package that allows users to record and report the results. Such initiatives are taking crucial steps in the right direction and should be encouraged and expanded. However, because these data collection efforts have organically grown out of heterogeneous and ad hoc local needs, the collected data is not standardized or interoperable, making it nearly impossible to gain a more regional or national view. To ensure the collected data will be useful to track and improve equitable access to COVID-19 at-home testing, as more jurisdictions start to collect data from at-home tests, an agreement is needed on three key things:
- Collect negative and positive test results to allow a more holistic view into who is, or isn’t, being tested. Some jurisdictions are already tracking all at-home test results, but others are so far focused on positive test results only. A broad agreement and corresponding incentives to track all COVID-19 at-home tests will mean significantly better insights into the current state of testing.
- Collect a standardized set of key information about the person behind the test. Some jurisdictions are already tracking vital health equity information, such as socio-economic information about the test-taker, information about the reason for testing, and how the tests were acquired or accessed. This information, collected in a standardized, quantifiable, and reproducible way, will be vital to determine gaps in access to COVID-19 at-home tests and the key to developing strategies to close them.
- Share de-identified and aggregated information across jurisdictions and with the public. Various well-established public health IT solutions can make the collected information accessible, sharable, and useful across organizations and geographic regions while maintaining confidentiality data security and adequately restricting data access rights. Thanks to these types of solutions, public health surveillance systems for COVID-19 have been able to make quantum leaps during the pandemic. Public health surveillance experts from the federal to the local level already have many of the tools, experience, and lessons learned to make a more connected COVID-19 at-home test surveillance system a reality.
Understanding who is tested with at-home tests - and who is not – is critical for public health officials and community leaders and will be vital as we enter the third year of the pandemic. These data hold the key to ensuring nobody is left behind in the return to offices, schools, and other venues. Organizations and jurisdictions around the country are taking encouraging steps in this direction. Through data standardization, leading-edge technologies, and leveraging many of the data modernization lessons learned during the pandemic, we have a unique opportunity to help public health collect actionable insights. Equitable access to rapid testing can be a game-changer, for instance, making the difference between staying in school or losing valuable in-person instruction time. Data is the key to ensuring access is truly equitable.