By ADRIAN GROPPER, MD
As the U.S. reckons with centuries of structural racism, an important step toward making health care more equitable will require transferring control of health records to patients and patient groups.
The Black Lives Matter movement calls upon us to review racism in all aspects of social policy, from law enforcement to health. Statistics show that Black Americans are at higher risk of dying from COVID-19. The reasons for these disparities are not entirely clear. Every obstacle to data collection makes it that much harder to find a rational solution, thereby increasing the death toll.
In the case of medical research and health records, we need reform that strips control away from hospital chains and corporations. As long as hospital chains and corporations control health records, these entities may put up barriers to hide unethical behavior or injustice. Transferring power and control into the hands of patients and patient groups would enable outside auditing of health practices; a necessary step to uncover whether these databases are fostering structural racism and other kinds of harm. This is the only way to enable transparency, audits, accountability, and ultimately justice.
A recent review in STAT indicates that Black Americans suffer three to six times as much morbidity due to COVID-19. These ratios are staggering, and the search for explanations has not yielded satisfying answers.
“The Sutter and MIT studies cast doubt on whether individual risk factors are as important as social determinants of health in affecting someone’s chances of contracting severe and even fatal COVID-19,” the article explains. “To reduce the U.S. death toll now that many states are seeing a new surge in cases, [Philip Alberti, senior director for health equity research at the AAMC] said, ‘our response to this disease must look beyond the strictly medical.”
Social determinants have a large impact on hospitalization rates. To study and correct structural racism we will need to link a person’s social determinants to their medical records and compare white vs. Black, state by state and county by county. This raises two related problems: privacy and analysis.
There is no more private information than one’s personal records. It’s unlikely that anyone, Black or white, will trust this combination to government or corporate institutions. That implies that the combined information will need to be under the control of the individual themselves. But analysis, almost by definition, requires access to many different people’s records as well as sophisticated methods consistently applied by experts.
Contact tracing in a pandemic illustrates these two related problems. The privacy component is a person’s detailed record of social contacts and medical symptoms. The analysis component is the trained public health agent that seeks to access a person’s record and link it to the contact records of other people while also sending valuable epidemiologic data upstream to scientists and politicians. Trust in the process is essential. A lack of trust in the public health agent leads to a lack of individual cooperation, delayed science, and political manipulation. Trust is enhanced when the records are strictly controlled by the individual, using open source and easily peer-reviewed technology. Trust is also enhanced when analysis methods are open source, consistent across counties, states, and nations, and supervised by trusted community representatives.
Today’s institutional health records obscure systemic racism because they are not trusted to include social determinants of health and they are not transparent or consistent in how they are analyzed. These health records are not controlled by the individual patient. Under HIPAA, they can be used and shared by the institution without patient consent or even after-the-fact transparency. The use of our records is routinely manipulated to increase revenue through enhanced billing as well as through sharing with for-profit companies that use the records to create trade-secret medical analytics that, in turn, add cost to future patients. Current trends around individual control of health records are not encouraging. In response to the opioid crisis, privacy protections over sensitive behavioral health information are being reduced, making the voluntary contribution of accurate social determinants data even less likely in the future.
The analysis of health records is also impeded by institutional control. The hospitals that hold our health records compete among each other for subsidies and with privately financed startups for patients. Objective quality data and price transparency required to compare value is almost non-existent after decades of “managed care” and “value-based payment” promises. For their part, our politicians and policymakers routinely manipulate access to analytics in order to obscure disparities in access to the social determinants of health such as housing, education, and health insurance. As reported by STAT, an analysis by scientists at the Harvard T.H. Chan School of Public Health notes that less than half of U.S. states disaggregate COVID-19 cases or deaths by race/ethnicity:
“For example, data from the COVID-19 tracking project  suggests that only ~21 states currently report COVID-19 cases or deaths disaggregated by race/ethnicity, and among those that do, substantial proportions (typically ≥50%) of cases and deaths are of unknown or missing race/ethnicity.”
The alternative to institutional control of health records is universal health records that are controlled by the individual under policies suggested and supported by an individual’s chosen community.
Universal health records would be equally accessible to physicians, public health agents, medical and social scientists. The artificial barriers to access and analysis posed by institutions and political jurisdictions would be reduced. The quality of our medical science and public policy would still depend on some privileged elites, but at least we, as patients and citizens, would gain the advice and support of our own communities.
Adrian Gropper, MD, is the CTO of Patient Privacy Rights, a national organization representing 10.3 million patients and among the foremost open data advocates in the country.
This post originally appeared on Bill of Health here.