The COVID-19 pandemic has changed all our lives. Beyond the physical and mental health effects of SARS CoV-2—the virus that causes COVID-19 disease— there are a multitude of other factors such as loss of income, loss of family members, deferral of health screenings and care for chronic diseases, loss of time in school for children etc., that will impact Californians for years to come. Given the disparities seen in the distribution of SARS CoV-2 infections, it is likely that communities that have already been disproportionately affected by infection will be further impacted by the sequelae, or long-term impact, of SARS CoV-2. For us to optimize California's recovery and support for addressing these long-term impacts, as well as continue to improve our adaptability and response to future surges of new SARS CoV-2 variants, other respiratory infections, and other public health emergencies, we must be intentional in our assessment and analysis of the depth and breadth of how this pandemic has changed lives. By continuing to leverage California resources and partners to adapt to lessons learned and evolving evidence about SARS CoV-2 variants, as well as the impact of both the disease and interventions, crucial input from these efforts can inform future critical decision making so policy makers can develop policies, strategies, and programs, to facilitate and direct resources to individuals and communities most in need.
Given its large, diverse population, California is uniquely positioned to provide insight into how the pandemic and related policy decisions have impacted society. As we transition into this next phase of the pandemic and implementation of the SMARTER Plan, there are several key areas for California to focus on when assessing and addressing the long-term impacts of this pandemic. First, it is important to understand the direct physical and mental health consequences of infection with SARS CoV-2, what is typically referred to as "Post-COVID Conditions" or "Long COVID." Second, there is a need to understand the long-term health, economic and societal consequences of living through this pandemic, for both survivors and those who did not experience infection. Third, coordinated research and analyses on the relationship between the pandemic and community level social determinants of health is needed, as well as evaluation of the effectiveness of economic, employment, and other social policy measures on mitigating the negative effects of the pandemic on communities and individuals. All of the important evidence assessed and analyzed in the first two areas will be important to inform future policies. Finally, there needs to be an infrastructure to support public health and academic collaboration to align and prioritize applied research that benefits all Californians.
Post-COVID Conditions Surveillance in California
The California Department of Public Health (CDPH) is adopting a multi-faceted approach to measure the burden of post-COVID conditions in the state. In collaboration with University of California (UC), San Francisco and UC, Los Angeles, CDPH is working on a CDC-sponsored, national prospective cohort study named Innovative Support for Patients With SARS-COV2 Infections (COVID-19) Registry(INSPIRE), which is aimed at defining incidence, clinical characteristics, and risk factors for post-COVID conditions. A survey tool has also been created for use by local health jurisdictions interested in collecting post-COVID data. CDPH also participates in the University of California Office of the President Long Covid Working Group, and may work with partners to collect other clinical data from post-COVID clinics, health records, or other data sources.
Longitudinal Cohort Study
Using the power of longitudinal assessment and in collaboration with federal and academic partners, CDPH will seek to have the federal government fund a population-based, prospective cohort study in California examining key domains of pandemic societal impact. Domains assessed could include:
Impact on specific populations – children, older Californians, people with disabilities, communities of color, others disproportionately impacted in areas including but not limited to:
Financial/economic – changes in employment, loss of income, disability
Business/industry – mandated closures, supply chain issues, revenue
Housing – foreclosures, relocation
Behavioral health – depression, anxiety, suicide, substance use, PTSD
Direct and indirect health outcomes – Post COVID conditions, chronic illness management, new cardiovascular disease, diabetes, neurological disease, excess mortality
This study will enroll persons with and without a history of SARS CoV-2 infection and follow them for several years. After administration of a baseline survey, follow up surveys would be administered every few months and data analyzed and presented periodically.
Assessing Community and Policy Impact
CDPH and partners will pursue an equity-focused assessment of broader community-level long term pandemic impacts as well as analysis of the impacts of pandemic policy interventions on society. Data from the surveillance and cohort study described above will inform our understanding the broad impacts of COVID-19, and additional policy focused assessments and analysis will offer ongoing insight to understand the current status and changes in upstream determinants of health over the course of recovery and help identify the most effective policy tools for addressing future surges and pandemics to minimize health and social inequities.
Individual surveys including questions regarding both individual and community level impacts
Other data sources could be overlaid on survey data, including:
ICD-10 codes from health systems
Disability and workers compensation claims
Department of Health Care Access and Information data
Healthy Communities Indicators and Adverse Childhood Experiences
Complementary analyses of other community-level data (economic indicators, educational attainment, causes of death, substance use disorder, crime, etc.)
Analysis of policy interventions including health protection, worker safety and economic stabilization measures
Qualitative surveys, focus groups, and data from stakeholder engagement
All study designs will allow for geographic and demographic sub analyses
Building a Sustainable Public Health-Academic Partnership
Building on existing academic partnerships, CDPH will catalyze an interdisciplinary working group to facilitate and pursue federal funding for this type of applied research, ensuring inclusion of community-based participatory research. CDPH would contribute to research alignment and prioritization. CDPH subject matter experts can contribute to study design and ensure representative sampling, while also being a key recipient of study data, which would be used to inform policy decisions, resource allocation, workforce decisions and future pandemic preparedness.
This would be one key component of an envisioned California Collaborative for Pandemic Readiness and Recovery Research. Numerous state and national efforts are focused on preparing us for the next phase of this pandemic including readiness and recovery [e.g., CA SMARTER plan, National COVID-19 Preparedness Plan, A Roadmap for Living with COVID]. In order for California to meet these challenges we must continue to learn rapidly from our previous interventions and this can only be achieved through expanded collaboration with our academic partners. Across the spectrum of readiness and recovery activities (surveillance, early detection, vaccine, testing, treatment, recovery, equity efforts, mental health, etc.) we must partner with researchers to prioritize, design, and conduct research that will inform shorter and longer terms population health decisions. Research conducted in California will benefit the US and beyond. We have the talent and commitment to the transdisciplinary science that will be required to improve our readiness and promote a healing recovery. California has embraced challenges like this before (HIV/AIDS and precision medicine) and will do so again. Working together, the state can modernize its data and information systems that will benefit health and human services, and research.
This is just the beginning of our journey to learning to live with COVID-19, as we enter this next phase and expand our important partnerships developed and improved over the course of the pandemic to continue to learn and adapt, this effort to understand and communicate the impacts are fundamental to our recovery to be better and more prepared than ever for the next public health challenge.
Convene key partners to review these concepts, refine, and identify key leaders to move the work forward
Develop formal proposals for study designs and discuss with federal, state, and philanthropic partners
If potential partner organizations have additional input or feedback into this initial concept paper on assessment of long-term pandemic impacts, please submit to Novelvirus@cdph.ca.gov. Please submit interest in the workgroup and feedback by 3/18/22.
Additional Resources & References
Other examples of National and global studies and efforts that may inform California-specific efforts: