People’s’ health-data website launches in Europe

By European Alliance for Personalised Medicine (EAPM) Executive Director Denis Horgan

Wednesday 25 November saw the launch of a new website that aims to run ‘citizen-owned personal data cooperatives’ to protect personal health data while allowing its use for vital health research. 

The MIDATA cooperatives will enable patients to gather all their different data in one secure place, allowing them to decide to share it with physicians or to participate in research.

MIDATA.coop lets citizens securely store, manage and control access to their personal data by helping them to establish and own national/regional not-for-profit MIDATA co-operatives.

Professor Dr Ernst Hafen, of the Zurich-based Institute for Molecular Systems Biology at ETH, is one of the key drivers of the scheme. He said: “As MIDATA members, citizens can visualise and analyse their personal data. They can actively contribute to medical research and to clinical trials by providing access to sets of their personal data across cooperatives. These are citizen-owned and citizen-controlled.”

He added: “Transparency is ensured by the fact that the governance principles of MIDATA cooperatives are public. Members are informed and can participate in decision-making processes. They can also withdraw their personal data at anytime.”

Data held by MIDATA.coop are multiply encrypted and only the members possess the key to their own data. Every instance of access is logged. It is envisioned that secure citizen-controlled data access across different national co-operatives will be established to permit global research projects and clinical trials. It will also enable a democratization of the personal data economy.

The MIDATA model enables the construction of regional/national co-operatives that, by a set of common rules, permit global research projects in a fair and democratic manner.

Such developments are not before time. ’Big Data’ is here and here to stay. Its use in the field of personalised medicine, for example, cannot be understated but it comes with its own issues.

Data privacy is a concern for many and, while the EU trilogue of European Council, Parliament and Council continues to debate the proposed General Data Protection Regulation, ways need to be found to strike a balance between protecting the citizen and enabling them to actively control the secondary use of their own data.  Active citizen participation will benefit society and improve the quality of life, treatment and outcomes for Europe’s 500 million citizens.

These citizens will encounter differing health problems, including rare diseases such as the many types of cancer, and these illnesses will be spread across all 28 member states.

For the most part, vital data is stored in separate, multiple ‘silos’ and is difficult to share. This clearly reduces its potential value to doctors, scientists and researchers across the EU. Many stakeholders, including the Brussels-based European Alliance for Personalised Medicine (EAPM), argue that EU legislation is in danger of putting too much emphasis on protecting the individual and too little on the undoubted societal benefits that could be achieved with better use of the masses and masses of date that are now being gathered and stored.

Professor Hafen, who works closely with EAPM, believes that personal data banks, run as not-for-profit cooperatives, are a viable solution that both safeguards the citizen and empowers him or her as he or she will own their data and be able to decide where, when and how it may be used. Meanwhile, this vital, personal information will be safely stored under strict ethical codes and rules.

He said: “Members of MIDATA co-operatives will be able, from day one and forever, to have the choice of who can share their data and for what purpose and, should any monies be earned from third parties, they will also be able to decide where this cash goes. They will truly own their own data and be able to reinvest any proceeds in research and/or education for the betterment of society.”

He also emphasised: “Citizens are well-protected. We work under the tenet of ‘free the data, but do no harm’.”

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