Data access and sharing 2017 PEPFAR Data and Systems Applied Learning Summit Data access and sharing September 19, 2017

Welcome Welcome to our session on data access and sharing. We wanted to organize an opportunity to talk and share ideas on this important topic.

Agenda Estimated Time Topic 10 minutes 1. Welcome and PEPFAR data sharing efforts 10 minutes 2. Facilitated table-based discussion with report outs 50 minutes After a brief introduction we’ll transition to facilitated conversation at your tables and wrap up with report outs and reflections.

Primary data streams, access, and sensitivity Monitoring, Evaluation, and Reporting Indicators (MER) Site Improvement Through Monitoring System (SIMS) Expenditure Analysis Budget Organization unit (OU) hierarchy Spatial Data Sustainability Index and Dashboard (SID) Surveys and Surveillance Implementation Science Evaluations Yesterday we reviewed the primary data streams. There’s often a tradeoff between data aggregation and the utility of data for answering questions. Yet data aggregation is one of the best ways we have of assuring confidentiality and addressing other data sensitivities. To take MER as an example, we settled on aggregation to the facility-level or low-level administrative unit, with an exception for services supported at military sites, where we aggregate data to the national level. PEPFAR’s public display of data goes only to the district. Striking the right balance here is an ongoing discussion to make sure people have the right level of access when they need it while minimizing risk. And a similar balance is needed for each or the data streams. Data aggregation Analytic utility Data sensitivity Data aggregation Barriers to access Analytic utility

Data governance OGAC has been putting more and more effort into developing guidance and policy to help responsibly manage data. Our working definition of PEPFAR data governance is: The creation and implementation of repeatable and scalable data management policies, processes, and standards for the effective use of data in PEPFAR.

PEPFAR Data Governance The PEPFAR Data Governance document went out to country teams for feedback a couple of months ago and will be released later this month. This document is a complement to data policy from the Office of Management and Budget as well as agency implementations of that policy. It has sections on data access, security, quality and standards. As Irum mentioned, it’s a living document and a data management policy for PEPFAR that we want to build on.

Access categories Public: Data are or could be made publicly available to all without restrictions. Restricted Public: Data are available under certain use restrictions (e.g. made available to select researchers under certain conditions). Non-public: Data are not available to members of the public and is only available for internal use by the Federal Government. This morning were going to focus on access and sharing. The U.S. Government categorizes data in three ways: It’s completely open to the public. It can be made available under certain conditions, such as through a data use agreement. Or it’s for internal use only. Chief Information Officer. Supplemental Guidance on the Implementation of M-13-13 “Open Data Policy – Managing Information as an Asset”. https://project-open-data.cio.gov/implementation-guide/

Why data access and sharing? Support the effective use of data for decision making Increase the quality of data Enhance understanding of data and analysis Improve transparency, trust, and coordination So why data access and sharing? AMB Birx has talked about crowdsourcing solutions to shared and challenging problems, the idea being that the more people that have access to data the more opportunities there are to generate insights from those data that can then feed good decisions – and that it’s hard to know in advance where those insights may come from. We also know there’s a feedback loop between data use and data quality. One of the most common ways we discover data problems is when we start working with them.

Why data access and sharing? Support the effective use of data for decision making Increase the quality of data Enhance understanding of data and analysis Improve transparency, trust, and coordination We need to understand the inputs to an analysis to understand and have confidence in the outputs of our analysis. And finally, there’s the relationship between transparency and coordination: sharing data is the only way to answer the questions “who is doing what, where”?

Dashboards, calendar, metadata and security When you look around PEPFAR today, you’ll see data governance everywhere. It’s dashboards, the calendar, metadata, and role-based access to DATIM. These are all expressions of the way PEPFAR is managing and sharing data.

Discussion topics Question 1: In your experience, how does access to data affect the response to the epidemic? What are benefits to increasing access to data? What are costs associated with increasing access to data (e.g. human resource costs or potential risks)? 7 minutes Question 2: What are barriers to effective data sharing for epidemic control? Organize barriers into technology, policy, and other. 7 minutes Question 3: What opportunities do you see for improved data sharing and access? Which might be easier to implement? Which are harder? Why? 7 minutes OK. We want to hand this discussion over to you. First, we have questions about the relationship between data access and the response to the epidemic as well as costs and benefits. We’d like to hear about barriers, perhaps they’re technological, policy or other? And then what are opportunities for improved sharing and access?

Discussion objective Develop three or more recommendations for overcoming barriers to data access and sharing that could improve epidemic control. 10 minutes In your groups, please discuss and try to work towards recommendations for data sharing and access that could improve epidemic control. They can be simple or they can challenge us. We’d like to capture your ideas to help us write the next version of PEPFAR Data Governance. Facilitators please raise your hand. Do all facilitators have facilitator guides? We’d like you to start by identifying a co-facilitator who will report out on your discussion.

Ground rule Chatham House Rule: At a meeting held under the Chatham House Rule, anyone who comes to the meeting is free to use information from the discussion, but is not allowed to reveal who made any comment. It is designed to increase openness of discussion.

Thank You!