Advancing Health, Well-Being, and Equity through Community-State Data-Sharing Partnerships
The importance of addressing social determinants of health (SDOH) and health disparities is gaining increased recognition in the context of the health care delivery system as well as non-traditional or non-health policy areas (e.g., transportation, education, and housing). This recognition leads to a greater emphasis on how best to meet health-related social needs and promote community health outside of a clinical setting to improve an individual’s well-being. Further, it draws heightened attention to the need for policy and systems change to eliminate persistent disparities that have been caused by structural racism.
Once a commitment to equitable, person-centered care is established, how do professionals connect individuals with the diverse array of services they need to ensure health, well-being, and equity? Communities throughout the nation are innovating to coordinate efforts across public health, health care, and social services sectors to address community members’ needs in a more collaborative way through relationship building and information/data-sharing. These multi-sector, data-sharing partnerships can also connect with state policymakers who can contribute unique tools and levers to advance local-level efforts, and potentially guide broader policy, programs, and systems change. State-community partnerships can inform decision-making to improve community health and well-being, strengthen systems of care, and break down silos that perpetuate disparities and poor health.
Learning and Action in Policy and Partnerships
As part of its focus on strengthening alignment among public health, health care, and social services sectors, the Robert Wood Johnson Foundation (RWJF) is supporting Data Across Sectors for Health (DASH) in partnership with the Center for Health Care Strategies (CHCS) to lead an initiative that supports communities to strengthen and leverage relationships with state agencies in support of data-sharing efforts. The initiative will enable communities to bolster state partnerships to better inform inclusive policy and systems alignment at both the community and state level.
To shape the Learning and Action in Policy and Partnerships’ (LAPP) program design, DASH, and CHCS conducted interviews with thought leaders representing the relevant community, state, and national-level entities or government programs to understand: (1) current priorities in the context of COVID-19, an economic recession, and rising calls for racial justice; (2) new and emerging opportunities in support of data-sharing efforts; and (3) key ingredients for successful multi-sector data sharing efforts to improve health and advance equity.
1. Priorities in the Face of COVID-19, an Economic Recession, and National Calls for Racial Justice
The impacts of the pandemic and the economic fallout have been widespread, but are particularly prevalent among Black Americans reflecting longstanding inequities often stemming from structural racism. The current public health crisis is exacerbating inequities that have long-topped the ‘priority’ list for many in the public health, health care, and social services sectors, including in education, employment, housing, and access to quality health care.
Interviewees noted that COVID-19 pandemic response and recovery efforts remain a key priority at the community and state levels. Efforts remain focused on testing and contact-tracing, which have leveraged partnerships between local and state public health agencies, health care stakeholders, and community-based organizations to conduct outreach into communities. According to interviewees, data-sharing between health and social services can also be leveraged to ensure an individual who needs to isolate after testing positive for COVID-19 also has the necessary social supports (such as housing and food). As a vaccine becomes available, those state-community partnerships will likely transition to focus on equitable vaccine distribution and tracking.
In addition, interviewees underscored that pre-pandemic priorities for public health, health care, and social services collaboratives — including substance use disorder, maternal and child health, and social determinants of health — remain top-of-mind and in most cases are considered even more urgent now than before COVID-19. Rising calls for racial justice amid glaring COVID-19 health disparities and unjust police violence this year has also propelled states and communities to further examine efforts to improve health with a racial equity lens — and offers a concrete opportunity to standardize how diverse sectors collect, analyze, and make available race and ethnicity data. Interviewees confirmed that this health and economic crisis is making long-standing problems related to SDOH and health inequities even worse with combined hardships like hunger, interpersonal safety, stress, eviction and homelessness, and challenges with access to health care.
2. Emerging Opportunities in Support of Data-Sharing Efforts
COVID-19 presents some opportunities to support or advance data-sharing and integration. For instance, states and communities are interested in standardizing COVID-19 testing and tracing data across multiple partners’ systems, with uniform guidance on what is collected and how it is shared to facilitate exchange. Further, COVID-19 has presented greater recognition of the importance of capturing race and ethnicity data for public health emergencies and beyond in order to identify and address disparities at a targeted, local-level.
Several interviewees noted that while the Coronavirus Aid, Relief, and Economic Security (CARES) Act may have provided opportunities to support data-sharing efforts, it is challenging to coordinate across agencies in the context of time-limited resources. In addition, the pandemic has shined a light on the importance of investing in public health data systems that build on what communities have already invested in to connect individuals with the health care and social services they need. Interviewees underscored that there may be a window of opportunity to use the momentum of COVID-19 for changing the definition of success from a delivered service to a “whole-person” view.
Other opportunities noted include leveraging existing efforts, such as aligning community health needs assessments with state health improvement planning--and maximizing state authority, for instance, leveraging partnerships among Medicaid and Medicaid managed care plans to require standard measures.
3. Ingredients for Community-State Data-Sharing Efforts to Improve Health and Advance Equity
During our interviews, success factors for mobilizing multi-sector data-sharing efforts among community and state partners almost always pointed to competencies in:
committed and engaged leadership across partners;
clear, equitable data governance competencies and infrastructure; and
partnership/stakeholder engagement that supports shared understanding, trust, and accountability.
This includes having defined clear and realistic goals with established arrangements for data sharing (i.e., data-use agreements in place), decision-making, resource allocation, and project management. In addition to the critical focus on building technical capabilities and staff capacity, having an explicit focus on trust-building — especially among partners with historically unequal power or resource dynamics — is essential to success. This includes placing emphasis on understanding what each partners’ unique priorities, levers, and constraints are — and prioritizing stakeholder engagement and convening throughout the process.
Additional factors include: (a) inclusion of people with lived experiences as empowered drivers of the effort; and (b) long-term visioning to build on existing proofs of concept and develop use-case(s) with sustainable outcomes into that lay a foundation for future work.
Moving Forward
State-community data-sharing partnerships offer unique opportunities to advance health, well-being, and equity. These partnerships should be grounded in a shared governance model that has clear goals, policies and processes, and empowers individuals with lived experience to help drive the effort. With the right supports and success ingredients, data-sharing is a powerful tool to improve health and advance equity. Under the LAPP project, DASH and CHCS will work with five competitively selected community grantees that are engaged in data-sharing efforts with a state partner. Applications for the award are now open through December 16, 2020.