Should Patient Data Always Be Open?

Abstract

Nationwide registries containing personal information on socioeconomic status and medical conditions exist in many countries for administrative purposes. Along with large-scale, population-based cohorts created for research, these administrative registries are widely used in a broad range of sciences including medicine, economics and social sciences. There are concerns among the public that the use of these databases can threaten personal integrity; results from a recent opinion poll in Sweden show that 60% of the respondents only want researchers to have limited access to databases containing information about personal relationships or medical conditions. Desirable restrictions include, for example, only giving researchers access to anonymous data or data on selected illnesses or personal relationships. These concerns are most prevalent among older and less educated people. Conversely, it is clear that the same databases can be used to remove concerns or detect unrecognized threats. One example is vaccination programmes that prevent serious adverse health outcomes in children. Participation in these programs was declining some years ago due to concerns that the vaccination might cause autism. Large-scale studies using existing databases have provided strong evidence against this hypothesis, hereby removing much of this public concern. <br> Administrative registries exist, regardless of whether they are used for research, so it could be argued that it is unethical not to use the existing information to protect and improve public health. In discussions on large-scale databases, it is important to recognise both the concerns that are introduced and those that are removed. Karin Larsdotter is Research and Project Manager at the Swedish non-profit membership organisation VA, Public &amp; Science. She is the Project Manager for several projects dealing with public engagement, scientific literacy and responsible research and innovation, RRI. She is also responsible for the 2013-2014 edition of VA’s annual opinion poll on the Swedish public’s attitudes towards science and researchers: the VA barometer. Karin holds a PhD in environmental microbiology and has previously worked as a Project Manager for Researchers’ Night in Stockholm in parallel with research and teaching in microbiology at the Royal Institute of Technology. se.linkedin.com/pub/karin-larsdotter/24/b1/545

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