The second debate on Day Two of the Caspian Week Conference 2017 addressed an exciting new possibility in healthcare technology – the use of the masses of data now gathered on each individual person. Is a new data-democratisation on the way? Professor Ernst Hafen of the ETH in Zurich chaired the debate, which featured Effy Vayena of University of Zürich, Preeti Sinha of YES Bank, Serge Bignens of the University of Applied Sciences in Bern, Klaas Zuideveld of Caris Lifesciences, David Haerry of the Innovative Medicines Initiative's EUPATI project, Elsie Ngwa, a member of Ernst Hafen's team, and the computer scientist and novelist Massimo Marino.
Ernst Hafen opened the discussion by explaining that in this age of mass personal data, we need to define who has access to it. His project's aim is to give every citizen the right to receive a digital copy of the data collected on him or her and to create a bank-type system in which citizens store and manage access to their personal data. These MIDATA
data banks are organized as cooperatives that are owned by the people themselves. Preeti Sinha then opined that India would be a great playground for this new initiative, as it is a country of over a billion mobile phones and the government has just introduced a unique numbered ID system. Serge Bignens added that countries like Switzerland, Germany and Italy are currently experimenting with electronic health records to be shared between hospitals and GPs but that adoption is slow, data as still mostly pdf-based and it is unclear how patients can actively manage the sharing of their data with researchers.
Effy Vayena told the audience that for such a system to be ethical, patients would need to understand how their data is used, and also have a say not just in the use of their own personal data, but also on a macro level in how the data bank is run and how profits are used. This is why the MIDATA cooperative model in which the members of the cooperative which are also the data owners can stir the cooperative and decide on the use of the revenues. Klaas Zuideveld said that his organisation could greatly benefit from a unified database, as most patients don't have independent access to their data. Elsie Ngwa explained that innovative healthcare systems are desperately needed in developing countries such as Cameroon. Her team is working on introducing apps that record health data and enable better, more precise treatment. Again personal data gathered by these apps will be stored in local MIDATA cooperatives as a basis for ethical and fair data management.
Massimo Marino posited that a democratisation of healthcare data could mean progress in research and artificial intelligence. Giving an individual the choice who to share his or her data with would open up the possibilities of using the data. David Haerry said that much has changed since he was diagnosed with HIV several years ago. Swiss doctors created a database to learn from HIV cases in the country, and as a result David's treatment has improved every year. Why not extend this to every patient in the world?
Ernst Hafen took this opportunity to talk about some of the obstacles facing his project. Funding needs to come from research organizations, philanthropic sponsors or from the patients who own the database since the cooperative model is incompatible with venture capital equity financing. Effy and Serge added that enabling patients to actively engage in updating their medical records and adding health relevant data recorded via sensors and apps on their smartphone would improve healthcare outcome and medical research in general.
The floor was then opened to questions. One audience member initiated a discussion on how the ethical rules of a health database would be set. Effy Vayena said that trust would need to be built, and ideally the database would be run be accountable, trustworthy organisations such as citizen-owned cooperatives with clear and transparent governance rules. If all goes well, the future could bring healthcare data solutions by the people, for the people.