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Do patients really want to share their data? Nearly half of the rare disease patients responding to an international survey, are against their data being shared outside or even within the medical field.
Do patients really want to share their data? The question goes to the heart of the digital health revolution that strategists love to celebrate - and the strategists will be heartened by the results of a new poll by Europe's leading rare disease organization, Eurordis. The vast majority of the 2000+ rare disease patients responding to an international survey are supportive of data-sharing initiatives to foster research and improve healthcare, and willing to share their data to help research and treatment on diseases other than their own.
But this is no carte blanche. Nearly half the respondents are against their data being shared outside the medical field, and even within the medical field, nearly all of them want something close to full control over the data they share, both over who gets it, and what it is to be used for. They see big risks that their information may otherwise be shared with third parties without their consent, and be used in a context different from the one in which they disclosed it.
It includes recommendations to policy makers, researchers, funders, and patient organizations creating data-sharing initiatives, centered on issues of trust. Governance should be in the hands of people whom patients consider impartial - such as general practitioners - and serious attention should be given to keeping patients informed about progress and outcomes of research for which their data has been used.
The full report is published in the Orphanet Journal of Rare Diseases and makes challenging reading. It identifies the "numerous technical and regulatory boundaries which make sharing difficult and for many researchers, clinicians and institutions, still not standard practice." Aside from technical issues, Eurordis also points out that many institutions do not have a culture that promote new data sharing initiatives. And researchers remain subject not only to geographic, institutional, or disciplinary boundaries, but often governed by ‘silo mentalities’ that see sharing data as a risk to personal and professional benefits conferred by data ownership. Increasingly prominent attacks on - and sensitivity to - data security compound the difficulties. One of the key recommendations, accordingly, is that policy makers should pursue cultural, technological, and infrastructural changes to make a reality of international data sharing.
Eurordis and its numerous fellow-advocates of data sharing had better factor the results of this survey into their planning. Because for all the potential of digital health, without access to the data, not much is ever going to change.