Why Is Broader Access to Publicly Funded Data Important?

This infographic illustrates the policy inconsistencies and hurdles that can hinder use of publicly funded federal and state datasets for researchers.

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Researchers use data to evaluate effectiveness, quality and value in health care.

Having access to high-quality data can enable researchers to:

  • Promote cost-effective, evidence-based care
  • Predict treatment response for different patients
  • Evaluate innovative systems and payment designs
  • Many important data sets are publicly funded by: the federal government and state governments

A new study shows that there are barriers in accessing publicly funded data.

RESEARCHERS EVALUATED 116 federal and state datasets and ANALYZED 19 federal datasets and state all-payer claims databases (APCDs).

What did they find? Policy inconsistencies and other hurdles put publicly funded datasets OUT OF REACH for many researchers.

  • Federal datasets provide access, but researchers may face barriers based on: Affiliation, purpose, and funding.
  • Researchers also face indirect hurdles: prolonged wait times for approval and delivery, higher user fees, and recency of data.

4 out of 10 states provide access to state government and contractor employees only; 6 out of 10 states provide certain types of files to external research requests.

As of November 2014, Washington, Idaho, and Rhode Island are under development. Maine, New Hampshire, Massachusetts, Colorado, and Oregon make files available to external requesters. Vermont, Tennessee, Kansas, and Minnesota make files available only to state government and contractors.

The investment in data is growing faster than access is being addressed.

Balancing PRIVACY with ACCESS to quality, publicly funded data can help researchers TACKLE some of our biggest HEALTH CARE QUESTIONS, ultimately leading to important IMPROVEMENTS in care.

A graph shows a rapid increase in the investment of data while access remains flat.

What’s next?

Authors made 4 recommendations:

  • Focus on research quality and intent, not researcher's affiliation
  • Increase availability of granular data that can be linked
  • Utilize technology to enhance data security
  • Establish strong processes to alleviate indirect access barriers

Source: Doshi J, Hendrick F, Graff JS, Stuart B. Data, Data Everywhere, But Access Remains a Big Issue for Researchers. eGEMs. 2016.