Lawmakers: Show us the COVID-19 data
Public health systems struggled to collect even most basic information
Rarely has the public been so captivated by government statistics as it has since the pandemic.
COVID-19 data on infections, hospitalizations and fatalities determine where Californians can go, with whom they can associate and whether their businesses and other institutions can operate. Public health officials say they used the numbers to initiate sweeping shutdowns, mask mandates and other unprecedented interventions.
But several Bay Area politicians and epidemiologists say the most noteworthy thing about California’s public health data during this pandemic is its incompleteness and inaccessibility.
As coronavirus cases mounted over the past year, overwhelmed public health systems often struggled to collect even the most basic information about patients’ ethnicities, occupations and exposure to others, obscuring the true picture of the virus’s impact.
The fact that schools, businesses and public institutions are only now limping back to life more than 3.6 million infections and 60,000 deaths later, they say, merits a review of the
Golden State’s public health surveillance systems.
Critics of the state’s response, including state lawmakers, epidemiologists and academics, have kicked off a battle in Sacramento aimed at forcing public health agencies to improve how they collect data and to open it to the public.
Those demands for more oversight and access, however, have run into major opposition from both health officials and data-privacy proponents.
State Sen. Steve Glazer, D-Orinda, the author of Senate Bill 744, which would expand collection of coronavirus data, testified last week before his bill’s successful Judiciary Committee vote that “good science depends on good data, and we have unfortunately very little data.”
Glazer’s proposal is scheduled this month for a penultimate Appropriations Committee vote before the full Senate will consider it. The bill would mandate additional data collection about COVID-19 patients’ travel histories, households, occupations and workplaces. The bill would also require greater disclosure of state public health data to academic researchers.
While California currently has one of the lowest rates of coronavirus transmission in the country, and mass immunization appears to be drawing the state closer to “herd immunity,” those developments come after a harrowing year during which the pandemic fell hardest on disadvantaged communities.
USC professor Jeffrey Klausner, an epidemiologist and a former deputy health officer for San Francisco, cited death rates, continuing school closures and earlier countywide shutdowns to support his claim that “California’s public health response has been an abject failure.”
Klausner said data limitations forced public health authorities to enact sweeping countywide shutdowns with devastating economic consequences, instead of more targeted quarantines focused on smaller at-risk populations.
“The lack of good data resulted in the neglect of essential workers and the failure to implement testing of the workforce, which could have identified early cases and prevented spread of infection,” he said.
Coronavirus patient data is collected from three main sources: Laboratories, formal health care facilities and employers. Automated laboratory reporting is the predominant way that outbreaks are tracked. Employers who encounter infected employees also are required to report cases to their county health authorities.
Cases are also reported when patients are tested in formal health care settings by medical staff who are required to complete a document called the confidential morbidity report. That report includes a series of mandated questions about patients’ race, ethnicity and language. It also asks whether patients work in health care or live in an assisted living or correctional facility among other basic questions.
But lab and employer reports include much less information, health officers said — often little more than patients’ names, addresses and ages.
“Labs are generally not going to know, for instance, whether you’re in a congregate setting, what your gender preference is,” said Santa Clara County Assistant Health Officer Sarah Rudman. “Maybe they won’t even know if you’re Latino or African American or who you were exposed to.”
Alameda County Health Officer Nicholas Moss said health departments were overwhelmed by COVID-19 caseloads and most counties’ health surveillance protocols are designed to handle smaller epidemics such as sexually transmitted diseases and seasonal flu.
“Because COVID is so high volume and because we have all these testing sites, we aren’t getting (confidential morbidity reports) from everyone,” said Moss.
Even when full data is collected, it is held close by public health authorities. Confidential morbidity reports and employer data are compiled by 61 local jurisdictions and then submitted along with laboratory cases to the statewide CalREDIE health surveillance database accessible only by accredited health workers and researchers. Altogether more than 3,200 public health reporters, including labs, clinics and skilled nursing facilities, send communicable disease information to CalREDIE.
Glazer’s bill initially sought public release of anonymized health data, but Senate Health Committee Chair Sen. Richard Pan, DSacramento, yielding to privacy concerns, threatened to kill the bill unless those disclosure provisions were removed. Glazer’s compromise was to limit disclosure to academic researchers employed by accredited higher education institutions.
Even with the bill’s more limited data release provisions, the County Health Executives Association, the Health Officers Association of California and a variety of privacy advocates, including the American Civil Liberties Union and the Privacy Rights Clearinghouse, opposed the legislation.
On the other side, the California Teachers Association, one of the state’s most powerful unions, supports the bill’s data collection expansion and was disappointed that broader disclosure provisions were stripped out. The union has been engaged in months of tense negotiations with the state over school reopenings.
“Making more school virus data public would have established greater public trust around the safety of our school communities,” said CTA spokeswoman Lisa Gardiner.