DATA MOVES AT THE SPEED OF TRUST Building Trust and Accountability Through Open and Responsible Data Practices Subhashini (Shubha) Chandrasekharam PhD Global Digital Health Forum, December 14, 2016

What is Health Data - Changing Definitions Good morning and welcome to the panel “Data moves at the Speed of Trust” I am Shubha Chandrasekharan and very brief intro of the amazing panelists (names and orgs only of panelists) Before we get started a brief description of todays panel will go. Each speaker will have 6 mins and then we will have about 7 mins of Q&A. After that we will break into small groups. I will begin by very briefly seting the context for panel. As digital technologies enable us to collect store and share increasing amounts and types of data , we see tremendous opportunities for improving health globally. But with it comes increased concern about potential for risks for individuals and communities especially due to loss of privacy. Assessing those risks and benefits is particularly challenging given that our understanding of what constitutes health data is constantly changing. As you can imagine with it we face questions about what constitutes PHI and how e protect them/.

Risks and Benefits – Changing considerations Also adding to this challenge is the complexity of the types of data we can now combine and analyze whether it is open data (from govs), public health data (from govs NGOs and international organizations) or social media data primarily commercial entities. Established ethical principles especially for biomedical research and clinical highlight the need to reduce harm and maximize benefit particularly for those for vulnerable populations, Questions of how we balance risk vs. benefit, minimize harm due to privacy loss and both enable public goods and transparency and accountability are not easy to answer and are highly contextual but maybe best addressed from a framework of engendering trust. We will begin by hearing first from a set of development experts about their insights on practices, processes that provide real word context to these questions.

Protecting Privacy/ Data security Use data for decision-making, performance improvement and better outcomes Open data for transparency, accountability and public good As we begin these discussions I will leave you with the tensions around data that we need to balance as we think about how we can build trust around use of health data.