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Trust and transparency are essential for sharing health data
A learning healthcare system, including the necessary health data infrastructure, cannot be built without the trust, support, and involvement of citizens. Especially patients.
But how to involve citizens and patients in the development of data-sharing infrastructures and policymaking? During the Health-RI congress on October 6th, a group of experts, including patient representatives, policymakers and researchers, exchanged ideas.
The Netherlands Patients Federation represents more than 200 patient organisations. In 2021, the Patients Federation conducted a survey among patients, questioning them about the willingness to share medical data and the reuse of data by other organizations. The survey showed that 97% of the patients surveyed – more than 12,300 people took part in the study – are open to sharing their health data.
“People would like to share their data, but the research shows that they do want to be well informed about the research goals and stay informed”, according to Ildikó Vajda, policy advisor at the Patients Federation. For 80% of the participants of the survey, it is important to be informed about the outcomes and results of the scientific studies where their data was used, for instance. It is also important for patients that their data is kept safe, does not fall into the wrong hands nor that profit is made with the data," says Ildikó Vajda.
Independent committee representing the societal perspective
Health-RI is committed to make the opinion and vision of citizens and patients an integral part of the organization and its activities. A new independent committee has been set up within Health-RI that focuses specifically on the patient's perspective: the Patient & Public Advisory Committee, says Miriam Beusink, secretary of the committee. In addition to her work at Health-RI, Beusink is a PhD student and conducts research into the ethical, societal and patient perspective on data research.
Recently, the Patient & Public Advisory Committee has become a permanent part of the governance of Health-RI. In this way, in addition to industry, professionals and researchers, patients (representatives) and citizens are an equal discussion partner, sharing and contributing ideas about what is important for citizens and patients when it comes to using, re-using and sharing healthcare data.
Advocate of patients, member of the Social Advisory Council
Dr. Larissa de Lannoy did her PhD research in pharmacology and worked in the pharmaceutical industry for over twenty years. After being diagnosed with a rare disease herself, her drive to become a patient advocate increased further. “I want to be a voice for the people who currently have no voice, by using my professional experience, knowledge and my experience as a patient.”
De Lannoy works for various Dutch and international organizations and advisory committees, amongst the Health-RI’s Patient & Public Advisory Committee, focusing on how data can contribute to better treatment options, more knowledge and scientific breakthroughs for (rare) diseases. “As some diseases are so rare or very little is known about them, the treatment options for patients are limited as well. Data can contribute to more knowledge and innovative new therapies. The only treatment that is of value to a patient is a treatment that is available. Health data is essential for this.”
“Trust and transparency are essential for sharing health data”
“Citizens are also involved in policy and legislation at European level. When the European Health Data Space (EHDS) was established, an online consultation round and physical meetings formed an important pillar for the draft legislation on the sharing of health data”, says Wannes van Hoof (TEHDAS/Sciensano). TEHDAS stands for the Towards European Health Data Space project, which should serve as an advisory body for the upcoming European Health Data Space by developing data-sharing concepts. The EHDS is a new European regulation for large-scale health data sharing, both for healthcare across European borders and for research and innovation.
In co-operation with the Swedish government, RIVM has a leading role within TEHDAS around the theme of data sharing. It helps when countries join forces, says Van Hoof: “The joint action helps the Member States and the Commission to develop and promote concepts for sharing data for secondary use. This contributes to citizens' health, public health and health research and innovation in Europe.”
“Citizens and patients must be well informed about what happens to their health data and what is or can be achieved by sharing data. For many European citizens, the premise is that health data is a common asset. Just like the air we breathe, which is available to everyone.”
Read here the article for Citizens and patients.