The Ethics of Collecting Data @ Medidata

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HOST:

Medidata (https://www.mdsol.com/en) sits at the intersection of technology and Life Sciences industries. We are the market-leading software developer of clinical development process applications, tackling real-world problems and making a real difference in the lives of patients everywhere. With the current transformation in the life sciences industry, we are at the forefront of providing an advanced clinical development platform for our clients to further improve the accuracy, timeliness and ease of the data collection process. That means better treatments can reach waiting patients sooner. We are publicly traded (MDSO) with over 630 customers, customer retention rates above 99%, and the experience of supporting more than 10,000 clinical trials. We are still led by Co-founders, Tarek Sherif and Glen de Vries, and have global operations in US, Europe and Asia.

SPEAKERS:

**Jane Stewart Adams is a data scientist, programmer, and writer living in Brooklyn. She holds a B.A. and an M.S. from New York University in complex systems and urban data science. Her complexity work has focused on emergence in complex systems, the phenomenon of relatively simple individuals interacting in relatively simple ways giving rise to complex collective behavior, for example, how ants find your picnic basket (https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&cad=rja&uact=8&ved=0ahUKEwi8zszd3OvLAhVMGh4KHU3LDuUQtwIIJDAB&url=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DD9LiMrcm7Kg&usg=AFQjCNHHnepCvaTGgUyRhHWwZ2LULKVZIg&bvm=bv.118443451,d.dmo). She has explored this theme in her personal, professional, and creative work primarily through data and code.

Her data science work has focused on how to use data to help people, which began during her masters work on estimating and mapping the unauthorized immigrant population of New York City (https://chohlasa.github.io/undocumented/). Since then, she has spoken publicly about how to use data for social good, and how data can be and is used against certain people. She has several open source projects that aim to improve access to and experiences working with personal and public data.

Website: thejunglejane.com (http://thejunglejane.com/)

GitHub: http://github.com/thejunglejane

Talk Title: Administering Injustice: Why We Need Data Stewardship First

**Purnima Mavinkurve is Sr. Lead Software Engineer at Medidata and has been part of Medidata's Engineering group since 2012. She is now the technical lead of a team that focuses on building services that ingest patient data from various medical devices. Purnima has been doing software development for over 8 years starting in C++, moving to Perl followed by Java and now, at Medidata, she has been working on Ruby on Rails projects. She enjoys being active in the open source community, one of her contributions is the rack_content_type_default (https://github.com/mdsol/rack_content_type_default) gem. In her free time Purnima likes reading children's books, going for walks and watching movies/TV series. She has been finding Medidata's Jive community to be more fun than Facebook these days.

Title: Evolving Landscape of Data Privacy in Clinical Research

Topics covered: Data privacy, impact of regulations on clinical research, patient consent