A new EURORDIS-led article, “Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection – quantitative survey and recommendations” has just been published in the Orphanet Journal of Rare Diseases. The peer-reviewed article is freely accessed, it was written in collaboration with Rebecca Dimond, social scientist from the School of Social Sciences of Cardiff University. This article is the result of a long, extensive and comprehensive work and is based on:
– Results from the Rare Barometer Voices survey on rare disease patients’ perspectives on data sharing and data protection in healthcare and research that was carried out between March to May 2018 (over 2000 respondents);
– Previous qualitative studies and patient discussion groups run through several projects and initiatives including RD-Connect.
Based on these findings, the article also presents a series of recommendations to inform and support stakeholders (policy makers, researchers, funders and patient organisations) in shaping relevant, ethical and responsible data-sharing initiatives that would respect preferences from people living with a rare disease.