Data Working Group (DWG) of the PEPFAR Scientific Advisory Board
Tuesday May 24, 2011; 2:00-4:30pm EST
Participants: Meade Over (CGD), Mary Jane Rotheram (UCLA); Laura Porter (CDC), Nalinee Sangrujee (CDC), Ray Ransom (CDC), Delivette Castor (USAID), Noah Bartlett (USAID), Carlie Williams (NIH), Mary Kratz (DoD)
Cataloguing PEPFAR Data
A Data Working Group (DWG) subgroup convened to systematically categorize and catalog existing PEPFAR data, and they reported back to the group. Their outline/‘matrix’ was a broad high-level inventory of data collected under PEPFAR, classified by different types and sources of data at various levels. Types and sources of data include: Surveys & Surveillance, Program Results (Outputs, Outcomes), Program Costs/Expenditures, and Research at the aggregate National, Regional/District, Community, Facility, Household, and Individual levels.
Framework for Reviewing Available Data
The subgroup discussed the enormity of the task of characterizing and cataloguing data collected under PEPFAR (in which there are many sources of data, nuances, levels, standardizations, and confidentiality issues. After much discussion, the group realized that they needed to explore available data within a framework of key questions. This would permit a sharper focus on what data are available, gaps etc for each question.
There was a reminder that the PEPFAR Scientific Advisory Board (SAB) already identified key unanswered questions in which PEPFAR would be in a unique position to address at their inaugural meeting in January. A summary slide was forwarded outlining these priority research questions as recommended by the SAB. Hence, the group decided to use these questions to frame the matrix of available data.
The group decided that the next step should be a table organized by key questions, which includes available data sets (e.g. GIS, costs, IeDEA), types of variables, data availability and accessibility, utilization, and for/by whom for each question.
Follow-up: Carlie and Delivette will draft this table to share with the group for feedback. Nalinee will go back to the Finance and Economics Working Group and Budget to add fiscal information into the table. Carlie will also input IeDEA data into the table (when relevant), including what is available and accessible. DWG to review, provide input, fill in the table further. The next steps would then be to identify gap areas and recommend what is needed to fill these gaps. The goal is to structure and operationalize this information in order to provide key recommendations to the Ambassador to help answer key questions.
Models for Sharing Data
The subgroup also shared data management plans, which were selected for illustrative purposes using Spatial GIS Data as an example. Examples of how data are merged (e.g. program, survey, or surveillance) may be drafted by the subgroup if need be to describe how different kinds of data are managed. The subgroup also circulated a draft data management/sharing template plan for PEPFAR. It was noted that different agencies require a data management plan in place through their grants and contracts, so this should be kept in mind in terms of developing a standardized form for OGAC. In general the group liked the template forms and thought they might serve our purposes.
Follow-up required: Ultimate recommendation is to draft a white paper that specifies protocol and expectations for data sharing within PEPFAR.
Mission/Objectives of the Data Working Group
The group discussed and revised the working draft mission/objectives. After a rich discussion, the revised mission and objectives for the Data Working Group were as follows:
MISSION: The overarching mission of the Data Working Group of the PEPFAR Scientific Advisory Board is to advise the Global AIDS Coordinator on how the Office of the U.S. Global AIDS Coordinator (OGAC) can best gather, disseminate and set policy regarding information generated through the PEPFAR program, with the ultimate objective of improving health outcomes in partner countries and contributing to the common good through access to data and evidence-based decision-making.
Follow-up required: Chau will circulate the revised mission statement and objectives for additional feedback/final input from the group. Tiffany will post this final text along with membership and past minutes on the website.
Discussion was had on how to access and use IeDEA data more. As an example, information was shared regarding a Nigeria dataset which includes information on 1.5 million Africans. A proposal was put forward to PEPFAR requesting hiring a full-time IeDEA statistician to help answer key questions of interest to PEPFAR. Harmonized data, access and availability should also be clarified within this context.
Follow-up: A candid discussion was had about IeDEA data access regarding researchers and community interaction, including sensitivities with PIs in terms of data collection, data ownership, and data sharing. A suggestion was made to identify the sources of these problems, communicate, and try to amend the situation.
Next DWG meeting
The next data working group meeting will be held on Wednesday, June 29th at 11am EST.
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