The United States President's Emergency Plan for AIDS Relief

Minutes from March 17, 2011 Data Working Group Call


Office of the U.S. Global AIDS Coordinator
March 17, 2011

   

SAB Data Working Group (DWG) Conference Call
Thursday March 17, 2011
11:00 a.m. EST

Minutes

Overarching Issues

  • Level of access to PEPFAR data; transparency of data use
  • Kinds of data collected, but which are NOT reported up the chain to agencies/OGAC, however, not all available data needs to be reported—
  • Not clear what PEPFAR can require with respect to data reporting and collecting
  • Should additional data should be collected and reported?
  • What types of financial and costing data are being collected now, what should be collected, and how could PEPFAR use this information going forward
  • Can PEPFAR partner with existing data management and analyses endeavors like NIH’s International Epidemiologic Databases to Evaluate AIDS (IeDEA) to facilitate data collection and management
  • The role of the DWG is to establish priorities

Background of Working Group

  • The Data Working Group (DWG) was created by the PEPFAR Scientific Advisory Board (SAB) to address the fact that although extensive data are collected for PEPFAR reporting, researchers, clinicians and even OGAC do not have easy access to it
  • The SAB suggested that several priority research questions could be addressed with existing data, if such data were accessible and harmonized

Access to data: open access and open source

  • What key principles should be adopted to guide dissemination and transparency of information?
  • Confidentiality is a KEY concern—when and how should data be de-identified?
  • Facilitating open access to data is essential; should OGAC make an additional commitment to open source databases?
  • Rules governing access to existing data and access to future data should be disaggregated
  • National ministries would need agree to expand reporting beyond current indicators

Types of data that are collected and by whom

  • PEPFAR currently collects “programmatic data”: outcomes that can be attributed to PEPFAR activities, such as number of people on treatment, etc. This does not include partner-level data. These are reported as 30 essential program indicators known as the “NGI” (next generation indicators).
  • The level of detail in reported data has decreased over time due to heavy burden of reporting for the country teams
  • More partner-level data would allow for better disaggregation at the country level and better comparisons between partners and PEPFAR

How Data are Collected / Communicated across agencies and sources

  • Implementing partners may not report all the data they collect to the agencies, often because the agencies are not the sole funder of the implementer; so we need to know about data collected at the partner and agency level
  • Follow-up Needed: What is the legal standing of the US government in requesting patient-level data (e.g. CD4 counts) for patients supported by US government dollars?

Financial and Costing Data

  • PEPFAR has launched a special initiative to capture partner-level financial data on care, treatment, and prevention to improve program management and evaluation.
  • These data are collected by partner and by fiscal year, and are broken down into 9 program areas (PMTCT, facility based care and treatment, laboratory, prevention, etc.)
  • Collecting financial data is difficult: PEPFAR agreements do not currently require implementing partners to make financial data publicly available, and financial data add to the burden of country reporting
  • Follow-up Needed: A focused call specifically addressing financial data

IeDEA presentation and possibilities (Carly Williams)

  • IeDEA is the International Epidemiologic Databases to Evaluate AIDS (http://www.iedea-hiv.org/ )
  • Two Objectives:
    • Answer questions that cannot be answered with smaller databases
    • Examine the impact of change in treatment guidelines, with push toward earlier initiation of therapy
  • IeDEA aggregates data into a centralized database.
  • IeDEA collects quality data, programmatic data, site data, follow-up data, procedures at site, etc. In some sites they also collect cost data.
  • Challenges: Poor data quality at some sites , including the failure to collect some variables.
  • Successes: Enormous datasets have been compiled (300,000 patients in East Africa, over 400,000 patients in South Africa), and the quality of the data is known
  • Next steps for IeDEA: increase harmonization across datasets, use better statistical methods, and improve coordination with PIs and agencies like PEPFAR
  • Possibilities for collaboration: IeDEA already helps collect PEPFAR indicators in some countries, and has the potential to help collect much of the data that PEPFAR needs

Next Steps

  • Schedule a follow-up call for the week of March 28
  • Clearly define the objectives of the DWG , Mead had a suggestion
  • There was another objective we shunted to Mead but I cant remember what it was: maybe defining what was needed related to fiscal data or something like that
  • Consider writing a PEPFAR data charter, modeled on the WEF data charter
  • Schedule a separate call to discuss collection of financial data

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