Minutes from April 6, 2011 Data Working Group Call

Office of the U.S. Global AIDS Coordinator

April 6, 2011

SAB Data Working Group (DWG) Conference Call
Wednesday, April 6, 2011
11:00 a.m. EST

Overarching objective / mission for the group

The chair and OGAC representatives reiterated that the group exists in an advisory capacity, and there is no guarantee that recommendations will be accepted by the Ambassador or implemented by the PEPFAR agencies.

Discussion of the mission centered on the draft statement sent out by Mead Over (CDG) prior to the call:

“The overarching objective of the Data Working Group will be to advise the Office of the Global AIDS Coordinator on how it can best gather and disseminate information concerning the delivery of HIV/AIDS services in client countries, with the ultimate objective of maximizing the HIV/AIDS-related health benefits delivered in those countries relative to the resources expended. The working group assumes its purview includes advice on the management and timely release to the research community of not only information that OGAC currently receives from implementing agencies, partners and recipient countries, but also additional information, both quantitative and qualitative, which could be collected, managed and analyzed to achieve these goals.”

Working group members raised concerns that the statement’s focus on the “research community” may be too narrow. At the same time, it was clarified that external researchers should participate in the DWG’s work.

Follow-up required: The draft statement will be sent via email to the group members for input and modification (i.e. using tracked changes).

Cataloguing existing data

The group’s primary mandate is to make recommendations about how best to use existing research and programmatic data to inform and improve PEPFAR programs.

The first step must therefore be to systematically categorize and catalog the data that are currently available to OGAC, including those housed centrally in Washington D.C., at the agency level, and at the country level. Laura Porter and colleagues at CDC have already begun this cataloguing exercise.

Moving forward, Laura will continue this work in collaboration with Mary Kratz (DoD), Tim Fowler(Census), Noah Bartlett (USAID) and Nate Heard (State) . This subgroup will develop a matrix that lays out the kinds of data that are collected, by whom, at what level, and under whose ownership as well as legal obligations for making data public. The matrix will also classify data as inputs, processes, outputs, or outcomes of project. Finally, the subgroup will research the legal and policy framework governing each type of data in the matrix.

Follow-up required: The subgroup will develop a template for the matrix over the next two weeks and circulate it to the DWG. A follow-up call will be scheduled in approximately two weeks.

Proposal to create a data charter, i.e. rules governing access to data

While developing data sharing and/or open access policies is not the primary goal of the DWG, PEPFAR’s ability to utilize existing data is intimately tied to these regulations. However, group members pointed out several concerns with a blanket open access policy, including the following:

• Given the right to privacy, it is unethical to release patient-level data unless there is a clear public benefit to doing so
• There is a tension between the public’s right to data collected using public money, the individual’s right to data collected on him or her, and the implementing partner’s desire to maintain a competitive advantage in USG contracting
• Mandatory disclosure of all data collected by public money will result in a “data dump” that may not be useful to PEPFAR

Follow-up required: The proposal to create a data charter will be revisited once the existing legal and policy environment has been clarified in the matrix.

Expanding the scope of IeDEA

NIH’s International Epidemiologic Databases to Evaluate AIDS (IeDEA) is already conducting data cataloguing and aggregation activities with information related to HIV/AIDS treatment, specifically patient outcomes. However, IeDEA representative Carlie Williams indicated that the group is not well placed to expand its scope to rural areas or to prevention and care. Instead, the DWG will continue to work closely with IeDEA, utilize its work on patient outcomes, and consider its patient-level approach as one model for data aggregation. Furthermore, we will consider other similar models.

Follow-up required: Need to know about other existing IeDEA-like models (e.g. a similar model at CDC as mentioned by Laura Porter). Additional information from DWG members welcome, including other models for aggregated data and improving access.