[Excerpt from report summary by CHCS, published August 2022 and authored by Liz Buck and Alissa Beers, Center for Health Care Strategies, and Waldo Mikels-Carrasco, Data Across Sectors for Health]
"Longstanding structural inequities, particularly those facing Black, Indigenous, and People of Color (BIPOC) communities, require public health, health care, and social service sectors to be more accountable in supporting community members in decisions that impact their health. The COVID-19 pandemic exacerbated complex health challenges that involve different public systems and directly impact communities. This includes, for example, the mental health needs of youth during and beyond the pandemic, health inequities for people involved in the justice system, and the health care needs of people experiencing homelessness, among others. Sharing data across sectors and state agencies is a critical first step to guide effective policy responses that encompass multiple systems and address consumer needs and preferences. As more states seek to advance health equity, community members with lived expertise can help inform data and policy strategies that impact their lives directly, such as behavioral health access, housing, homelessness, food insecurity, and criminal justice involvement.
Partnerships involving individuals with lived expertise along with state and local partners have the potential to address broader systemic policy issues more equitably and effectively at the state or local level than partnerships without community advisement. While historically states have not included community members in data-sharing efforts, feedback shared by people with lived expertise is a critical data point that can guide more equitable public policy.
Data Across Sectors for Health (DASH), together with the Center for Health Care Strategies (CHCS) and with support from the Robert Wood Johnson Foundation, is leading a national initiative, Learning and Action in Policies and Partnerships (LAPP), to test new ways to support community-based data-sharing efforts. The first cohort included six communities — in Arizona, Connecticut, Rhode Island, South Carolina, Washington, D.C., and Washington State — that sought to strengthen relationships between communities and state agencies to address health equity priorities via data-sharing efforts (see Exhibit 1). This brief shares lessons from these six pilot sites to help guide additional states and community-based organizations (CBOs) in enhancing community data-sharing capabilities and fostering relationships between state governments, CBOs, and community members with lived expertise.
In Connecticut, DataHaven, in partnership with the United Way of Central and Northeastern Connecticut, conducted 20 focus groups comprised of members and affiliates of 10 Health Enhancement Communities and other local health improvement collaboratives across the state in addition to conducting surveys of more than 140 community members. These information-gathering activities sought to: (1) better understand participants’ ability to access data, including specific data resources and general information sources; (2) identify and prioritize information needs; and (3) make suggestions for addressing identified needs, including resources, policies, and system solutions.
Through these efforts, community members identified six data access priorities:
- Ensure availability of real-time local-level data that reflects demographic groups, such as minority populations or individuals with unique health and social needs;
- Ensure availability of real-time local-level data that reflects each neighborhood, town, or community in the area;
- Pool resources to link information from existing data sources (e.g., hospitals and community agencies);
- Ensure that data sources are published more frequently (ideally in real-time);
- Create a centralized infrastructure, designate state staff, and/or finance and train local level staff to help users access relevant information from myriad sources and agencies, assess its quality, and provide analytics; and
- Collect stories and qualitative data to share alongside statistical data from agencies.
In Connecticut, the identification of community members’ priorities directly informed the creation of a roadmap for addressing those needs. The roadmap outlines key state considerations for increasing community access to enhanced local-level data; increasing data sharing across state and local systems; training community-based staff on collecting, analyzing, and using data to better inform service provision; and planning and coordination among community-based and state agencies.
"Data-sharing partnerships among state government and community partners offer unique opportunities to advance health equity. These partnerships should be grounded in bringing individuals with lived expertise as key stakeholders in all aspects of data-sharing efforts. [...] The impacts of the COVID-19 pandemic, particularly on BIPOC communities, have created a renewed urgency for the public health, health care, and social services sectors to be accountable to the longstanding health needs of individuals and communities. Empowering individuals with lived expertise to contribute to decisions related to data and policy decisions is a step closer to achieving health justice and racial equity.
Cross-sector state and community partnership initiatives, like the LAPP project, illustrate how data-sharing partnerships among state government and community partners represent unique opportunities to advance health, well-being, and equity. They demonstrate that these partnerships should engage individuals with lived expertise in all aspects of data-sharing efforts. Bringing individuals with lived expertise into these initiatives requires a rethinking of how government traditionally operates and calls for new processes, funding mechanisms, and partnerships. If done well, these coordinated partnerships across sectors and involving people with lived expertise will have the potential to more fully address the broader systemic issues that have created health inequities across communities."