The Commission for Evidence-Based Policymaking held their first meeting of 2017 on Friday, January 13 at the National Academies of Sciences Building. The meeting focused on international and state models for managing data and included guest speakers from all over the United States as well as from several countries in Europe.
After the call to order and introductory remarks, speakers from Germany, the United Kingdom, Denmark and France spoke via webcam to offer perspectives on international models for acquiring, linking, and making data available to researchers and evaluators. Stefan Bender, from Deutsche Bundesbank, gave a brief history of the use of data in Germany and background of the bank’s recent Research Data and Service Center. He emphasized trust in researchers and its benefits, including increased data quality, more results on needed content and topics, and better knowledge of data overall. Tanvi Desai of the Administrative Data Research Network in the UK spoke on several topics, including administrative data passports for researchers, legal challenges of using administrative data, allowing citizens to opt out of data collection, and the differences in data collection among different countries. Ivan Thaulow, Statistics Denmark, gave an overview of the Danish Statistical Information System, which uses unique identifiers for individuals, dwellings, and enterprises. Finally, Roxane Silberman of CASD (Secure Access Data Centre) in France discussed the two step procedure for data access—each request is reviewed by the Comité du Secret Statistique, an independent authority consisting of lawyers, representatives of Parliament, unions, producers, and the National Authority of Privacy Protection. The commissioners had many questions, ranging from how laypeople are selected for review committees, the level of citizen engagement, privacy concerns, and commercial use of data.
Immediately after the first session, two public engagement videos encouraging and explaining the importance of data usage were shown (Linking and Protecting Government Data for Social Research, intended for viewers in the UK, and Better Data, Better Lives: How Integrated Data is Shaping New Zealand). Each video emphasized integrated data, de-identification, and examples of data use. In addition, both highlighted the benefits of data and the fact that data collection is to identify overall trends—“it’s not about you, it’s about us as New Zealand,” according to one video.
After a short break, a session on state models for acquiring, linking, and making data available to researchers and evaluators featured several representatives from state governments and universities. David Mancuso, Washington State Department of Social and Health Services, discussed using integrated administrative data for policy analysis, program evaluation, predictive modeling, and clinical decision support. Especially important for the success of the program is the recognition of potential by senior agency leadership and maintaining a commitment to build the system with external stakeholders. He also recognized that among other challenges, state agency leadership is constantly evolving, leading to consistency issues. Next, Kenneth Dodge from the North Carolina Education Research Data Center at Duke University addressed the new era of evidence and a demand for better analysis and partnerships between state government and universities. Currently, the research data center is funded entirely through fee collection. The fees raise some concerns, but steps have been taken to address these issues, such as waivers for young researchers and doctoral students. Domenico Parisi, National Strategic Planning and Analysis Research Center at Mississippi State University, emphasized the necessity of a data-centric approach. This includes public engagement with the data—that is, forming a common understanding of the value of the data, who is using the data, and so on. Robert Goerge, of Chapin Hall and the University of Chicago, also focused on public engagement, mentioning the need to see benefits and the need to feel included in the process. He also mentioned state challenges, including that states do not often have the capacities to run their own analyses, and reemphasized the need for partnerships between state agencies and universities.
Last but not least, Shawna Webster, National Association for Public Health Statistics and Information
Systems, and Charles Rothwell, National Center for Health Statistics, spoke separately on the challenges of the National Vital Statistics System. The system requires coordination from all fifty states as well as two cities (Washington, DC, and New York City) and five territories (Puerto Rico, the Virgin Islands, Guam, American Samoa, and the Commonwealth of the Northern Mariana Islands) to produce records of births, marriages, divorces and deaths. Although the National Center for Health Statistics is required to compile the records, the states are not required to turn over the data. Combined with the fact that different states use different systems and progress at different rates, the entire process can be quite a challenge. However, there are many lessons learned, such as agreements to use the same forms, which could be applied to a national data clearinghouse.
The Commission is scheduled to produce a report on their findings by September, and at this time, there are at least two additional meetings to be held in Washington, D.C. and a public hearing to be held in the San Francisco area. Keep checking back for more updates!