05 December 2016
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Creating awareness to make health data available

Health researchers often find it difficult to get access to patient’s and citizens’ health care data. And when they do, the patients or citizens are not always aware that their data is used.

Would a public campaign help to create more awareness? In October, the Patient and Public Advisory Council for biobanking research and infrastructure convened to discuss the issue.

BBMRI-NL aims to improve the availability and accessibility of data, samples and images for health research, in a FAIR way and guided by its ELSI policies to ensure the privacy of data and compliance with the law and the specific constraints as specified by participating biobanks. By proactively asking patients and citizens to donate or provide access to their data and samples, they could contribute to this goal. The Public and Patient Advisory Council, that provides a platform for patients’ and citizens’ needs, concerns and interests within BBMRI-NL, supports this goal wholeheartedly.

At the same time, the idea of setting up a public campaign on health care data shouldn’t be taken lightly: as it involves personal and sensitive data, people will want to stay in control. Although currently the public seems to be unaware about the use of health care data, there already is substantial public support for biomedical research. That being said, patients and citizens can contribute to the cause by probing doctors and hospitals: do you use my data and samples in research? If not, why not? Where and how can I contribute?  This way, along with patients’ and citizens’ voice in research, good use of data and tissue in health research could turn into a focal point on the agenda of health care more generally.

The Patient and Public Advisory Council (Maatschappelijke Adviesraad Biobankonderzoek) was set up in 2016 by BBMRI-NL. Along with researchers, academic institutions, patients and citizens, BBMRI-NL aims to build a shared national facility in which personal data, samples and images can be collected, managed and made available for health research in a sustainable, responsible and efficient manner. The Council is composed of a diverse set of interested and engaged patients, citizens, experts and advocacy organizations. The aim for the Council is to grow into a permanent advisory body for biomedical and health research infrastructure.

For more information, please contact Gerhard Zielhuis.