The IRI goes to Washington – 5th International Summit on the Future of Health Privacy

The 5th International Summit on the Future of Health Privacy took place in Washington, D.C., from June 3-4, 2015. The conference is a forum for practitioners from government and industry, and for academics, the media and the public to engage in constructive dialogue on the future of patient privacy. The summit was co-organised by Patient Privacy Rights, a US charitable foundation with the goal of restoring patient control over personal health information, and Georgetown Law’s O’Neill Institute for National and Global Health Law.  Past guests at the summit include Peter Hustinx, EU Data Protection Supervisor and Peter Schaar, former German Data Protection Supervisor, as well as the famous privacy scholar Alan Westin.

Invited to participate in the conference for the first time this year, IRI was represented by Magdalena Góralczyk and Alan Dahi, who took part in the session „Promoting Research While Respecting Privacy: The Promise and Challenge of using Patient Healthcare Data in Research“ and hosted an IRI session under the title „Health data: a bone of contention between researchers and patients? Contrasting EU vs US solutions for collection and use of health data through the examination of EURECA and MyHealthAvatar projects“.

The sessions were an excellent opportunity to present the European approach to the sharing of medical data and contrast it with the US approach. It was interesting to see that the level of data protection in Europe was often mentioned as a high standard, both negatively (as a hindrance to research and commerce) and positively (as a good balance between protecting the individual and permitting research and commerce).

Just as in previous years, the presenters included some world famous privacy names, such as Professor Masao Horibe, a highly regarded Japanese privacy specialist, and the first chairman of the Japanese Data Protection Authority, as well as Professor Alex Pentland of MIT, amongst other well known scholars. The organisers also managed to bring to the podium a number of persons responsible for privacy within the U.S. administration, such as DJ Patil, Deputy Chief Technology Officer for Data Policy and Chief Data Scientist at the White House’s Office of Science and Technology Policy; Jocelyn Samuels, Director at the Office for Civil Rights at the US Department of Health and Human Services; and Lucia Savage, Chief Privacy Officer, Office of the National Coordinator for Health Information Technology at the US Department of Health and Human Services.

A very tangible account of the potential consequences a breach of medical privacy can lead to was offered by Deanna Fei, a victim of a privacy indiscretion and the author of Girl in Glass, a memoir that recounts her experiences.

All of the sessions were video recorded and can be found here:

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