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Assessing & Improving Data Sources

Ideas listing

8 Ideas
9 Votes
10 Participants

Share ideas to identify immediate actions that address shortcomings in data collection and sharing to fight the pandemic.

  • What are the most useful kinds of data we have now? What data do we need that we don’t have?
  • How could we get more and better data from public sources, private-sector sources, or both?
  • What guidelines, tools, or other resources will help make this data available and shareable?
  • What steps will government and private-sector partners need to take to ensure data privacy, timeliness, and other requirements?
  • What new online tools, such as websites or GitHub repositories, would help support and accelerate this work?
  • What can HHS do to support this work in the next three months?



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Data quality

The individual data may be a bit harder than aggregate level data.  Also while the data today might be directionally valuable the data quality and inconsistency may prove vexing and biased. So some basic work on data sourcing, taxonomy and entity matching would be beneficial.  

2 Score
Comments 1

Partnering with NIEM to Facilitate Data Exchange at the Edges of Healthcare: SDOH Use Case

SDOH are the broad range of personal, social, economic, and environmental factors that determine individual and population health. The National Information Exchange Model (NIEM) is unique in that information is collected and shared for Justice, Statistics, Housing, and Human Services Domains. We observe that many social, economic, and physical environment metrics are likely to be drawn from databases created and supported by agencies that are required to use NIEM for interoperability. The...

1 Score
Comments 0

Systematically assess and apply federal SDOH data for use by HHS and its partners.

HHS and its partners would benefit from a deeper understanding of available sources of SDOH data inside the federal government.  HHS could build on its ongoing efforts to inventory and assess  federal data sources, such as Census, that can be made available at a granular enough level to be relevant to individuals and communities. By focusing on data with particular relevance to the COVID-19 pandemic, HHS could expand and accelerate its current efforts to  improve the use of SDOH data overall.

0 Score
Comments 0

Expand the use of the CDC’s Social Vulnerability Index (SVI)

The SVI is a well-established, concrete metric that can be overlaid with COVID-19 data for new insights and applications. The SVI could be used to better align local planning and response efforts by private health systems, local health departments, community-based organizations, and social services organizations.  CDC and its stakeholders can work to publicize the SVI and expand its use, while also gathering stakeholder input and implementing recommendations on ways to improve timeliness,...

2 Score
Comments 0

Build partnerships with local organizations to gather individual SDOH data

Questionnaires and interviews are an important source of SDOH data, but issues of trust may keep individuals from answering honestly when they’re asked in a clinical setting. Researchers could build partnerships for data collection  with churches, soup kitchens, and other organizations that already have trust in the community. Colorado’s Be Heard Mile High program is one possible model. This kind of approach is especially critical as people maintain connections with their local communities,...

1 Score
Comments 0

Rapidly adapt privacy guidelines to enable better data sharing

HHS can lead the way to clarify and, where necessary, revise privacy guidelines that now make it difficult to share data that is essential to fighting the pandemic. As a first step, HHS could clarify the kinds of dta sharing that are already allowed under HIPAA, which may be broader than many healthcare providers realize. Developing standard Data Use Agreements would help federal agencies exchange data with each other, with state and local governments, and with the private sector. Beyond...

1 Score
Comments 1

Develop an “Open Table” approach to connect individuals with social programs/services.

While the structural social determinants of health are important in understanding and treating COVID-19, it is urgent to address individuals’ social needs - the immediate need to help people at risk for homelessness, food insecurity, social isolation, or other factors that can impact overall health and COVID-19 risk. Roundtable participants suggested developing apps or other tools to connect people with social services as their needs are identified. Research on SDOH, through both population...

1 Score
Comments 2

Building data platforms to benefit local public health and social service agency response to pandemic

Rich SDOH data are needed at a local (sub-county) level so that public health departments, community service organizations and policy makers have the information they need to understand the characteristics of their most vulnerable communities and neighborhoods.  If they are armed with this information they will be able to reach those groups and strategize about culturally sensitive strategies for designing interventions to increase testing access, enhance vaccine acceptance (once available)...

1 Score
Comments 2