The Foundations for Evidence-Based Policy-Making Act, recently signed into law in the USA, stands to make government data more accessible; thereby allowing researchers, statisticians and others inside and outside of government to make better, and evidenced-based, policy decisions. Carla Smith outlines the scope of the Act and its potential implications for healthcare.

Our nation’s government collects a lot of data for the many, many initiatives and programs it develops. Under this new law, data can now be released to researchers, statisticians and evaluators by following the guidelines for secure access and usage

We have a new law in the United States that is very interesting – the Foundations for Evidence-Based Policy-Making Act. Signed by President Trump in January, it includes the OPEN Government Data Act.

This law got my attention when, at a recent public event, the Chief Data Officer of the Department of Health and Human Services let the audience know that, in her opinion, this is one of the most important pieces of legislation to become law in some years. I was hooked. Turns out this is, in fact, quite important legislation – and, there are examples from around the world. I’ve done my homework and would like to share it with you.

What, exactly, is the OPEN Government Data Act?

On Oct. 31, 2017, House Speaker Paul Ryan (R-WI) introduced H.R. 4174 and Senator Patty Murphy (D-WA) introduced S 2046, both calling it the Foundations for Evidence-Based Policymaking Act of 2017. In FedScoop, Tajha Chappellet-Lanier explained:

• It’s a government-wide mandate for federal agencies to publish all their information as open data – using standardized, non-proprietary formats.
• Agencies will be called upon to maintain comprehensive data catalogs and designate a nonpolitical chief data officer (CDO).
• The White House Office of Management and Budget (OMB) will also create a CDO Council, comprised of CDOs, to “establish government-wide best practices for the use, protection, dissemination, and generation of data.”
• Within three years of the legislation being signed into law, the Government Accountability Office (GAO) is to conduct a study to assess whether agencies have complied with the law, and value derived from the newly-public data.

Within the US Department of Health and Human Services, there are 11 agencies. On behalf of these agencies, HHS (along with other affected Departments, of course) must develop a plan that identifies and addresses policy questions relevant to HHS agency programs, policies, and regulations. Each plan must include two lists. One is a list of policy-relevant questions for developing evidence to support that department’s policymaking. The second is a list of data that that department can refer to for evidence in policymaking. These plans must be submitted to OMB and Congress annually. Once the plans arrive at OMB, OMB is responsible for creating one over-arching plan and submitting it to Congress, again, on an annual basis.

Where did the idea come from?

It all goes back to the call for evidence-based policymaking. The Evidence-Based Policy Commission Act of 2016 led to the formation of a 15-member commission established in March 2016. In September of 2017, this group released a report outlining how to inform future policy decisions in the federal government by leveraging data. Upon the release, Co-Chair Ron Haskins said, “The commission envisions a future in which rigorous evidence is created efficiently as a routine part of government operations and used to construct and evaluate public policy.”

This bi-partisan commission’s final report included 22 recommendations, including these highlights:

• Establish a National Secure Data Service to facilitate access to data for evidence building while ensuring privacy and transparency in how those data are used.
• Require stringent privacy qualifications for acquiring and combining data for statistical purposes.
• Require comprehensive risk assessments on de-identified confidential data intended for public release to improve how data are protected and risk is managed.
• Codify policies for maintaining integrity and objectivity in Federal statistics to promote continued public trust.
• Require public input, guidance, and participation in the policies and procedures for data linkage activities.
• Establish a new transparency and accountability portal for evidence-building activities.
• Increase efforts to make information available about the government’s current data inventories and supply related data documentation to help researchers.

Do other countries and regions have a similar law?

European Union: The vast amounts of data in the European Union public sector are known as public sector information or PSI. This data includes information similar to that in the US – statistics, weather data, research projects and digitized library books, that is – data that “public bodies produce, collect or pay for,” according to the European Commission, Digital Single Information website.

Now, that data awaits approval of a revised directive or agreement developed by negotiators from the European Parliament, Council of the EU and the Commission. Similar to the US law, this directive, once passed and renamed as the Open Data and Public Sector Information Directive, will make public sector and public funded data re-usable,” as noted on the Commission website.

Asia: In January 2018, the Singapore parliament passed the Public Sector (Governance) Bill  that identifies seven specific purposes for data sharing across government agencies. The legislation informs policy and service decisions and also stipulates that the agency requesting the data, as well as the agency owning the data, must protect it.

Why does the Foundations Law exist in the United States?

According to the Bipartisan Policy Center’s fact sheet, “when projects that use confidential government data are completed, agencies are not generally required to inform the public about what data are used and for what purpose. The bill establishes a new requirement that when government approves a qualified researcher to access confidential data, project information will be available to ‘ensure full transparency’ about how the data are used. In addition, all applications, even if not accepted, will be made public.”

In other words, our nation’s government collects a lot of data for the many, many initiatives and programs it develops. Under this new law, data can now be released to researchers, statisticians and evaluators by following the guidelines for secure access and usage. Rather than siloed collections of data across the different federal departments, those data – under to-be-developed protocols – will now be shared across departments.

What do these policy efforts mean for the healthcare community?

With government data newly accessible in a usable, non-proprietary format, researchers, statisticians and others inside and outside the government can use this information to make better, and evidenced-based, policy decisions. For healthcare and beyond, the government now must disclose open data online, and thus, make it available for viewing on everyday electronic devices – a smartphone, tablet or laptop computer, for example.

Within the United States, what are some of the Departments and Agencies impacted?

Many departments and agencies within the Federal Government will be sharing data including, but not limited to:

• National Institutes of Health
• Centers for Disease Control
• Food & Drug Administration
• Centers for Medicare and Medicaid Services
• Agency for Healthcare Research
• Department of Defense
• Department of Veterans Affairs

What’s next?

In the US, HHS is well underway with its efforts. The Office of the Chief Technology Officer within HHS has been a leader – more than 1,500 data sets have already been released for research and entrepreneurial use. Just this week, a number of data sets were released, including infrequently reported notifiable diseases, invasive pneumococcal disease among children younger than five years old, and monthly page views for cdc.gov.

In September 2018, before the Foundations legislation became law, Dr Mona Siddiqui’s team released the State of Data Sharing Report. Among other things, the report looks at how the 11 agencies sharing data must “build and implement an enterprise-wide data strategy at HHS.”

I encourage you to read the law itself and educate yourself. There may be ways that you can support this effort to free data, or to take advantage of increasingly-accessible data.