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When are we willing to share our health data?

2021-07-06

The health care system, research projects, and authorities, as well as many companies, depend on people sharing their health data digitally. In a recent study, Jennifer Viberg Johansson and her co-authors examine under which circumstances people are willing to share such information. 

Much of our health information is digitized already. Medical records are available online and we can easily share our information through fitness apps. We have become accustomed to looking for health information online and finding digital solutions to manage our health. 

Health data is the key to developing new diagnostic tools, treatments, and vaccines. But to access this vital information, researchers need the public to trust them with it. And understanding how they prefer to share this personal and sensitive information is key important. 

In a recent JMIR Medical Informatics publication, Jennifer Viberg Johansson, researcher at the Centre for Research Ethics & Bioethics at Uppsala University has explored what benefit-risk trade-offs people make before sharing their health data digitally. To do so, she asked almost 2 000 people aged 18-90 living in Sweden, Norway, the UK, and Iceland what their preferences were in a Discrete Choice Experiment survey. In this survey, people were asked to weigh different hypothetical scenarios against one another and pick the one they prefer. Once they have answered enough questions, a pattern is revealed. A preference pattern that reveals when and how people will consider sharing their health information. 

The results show that many, 85 percent of survey respondents, are willing to share their information if it is requested by the health care system and it is meant to evaluate health care services or the division of health care resources in the future. But the high willingness to share depends on whether or not you are informed about the data sharing, if there is a possibility to opt-out, and if a review process for how information should and should not be shared and used is in place. 

Only 14 percent of survey respondents would consider sharing their health information with a tech company planning to use it for marketing, that does not inform them about how their information will be shared, and if there is no review process for how data is shared. 

The Covid-19 tracking apps developed in the early pandemic raised great debate about the proper management of personal data. At the same time, we live in a world where we constantly share health data to the apps that track our heartbeat, or perhaps our morning run. According to Jennifer Viberg Johansson, what is most important to people is that they are informed of how the information they share about their health is used. If there is also an opportunity to opt-out, people are much likelier to consent to sharing their data. 

What is clear is that people in the Nordic countries are more likely to trust the health care system than a company. But large quantities of health data and the innovations coming from industry are what drives the health care system forward. 

"If the public does not trust that their data will be managed responsibly, the development of medical products and solutions will stagnate. This is why it is important that researchers and industry nurture this trust. And ensure that the public's demands for responsible data management are fulfilled," says Jennifer Viberg Johansson. 

Viberg Johansson J, Bentzen H, Shah N, Haraldsdóttir E, Jónsdóttir G, Kaye J, Mascalzoni D, Veldwijk J, Preferences of the Public for Sharing Health Data: Discrete Choice Experiment, JMIR Med Inform 2021;9(7):e29614. DOI: 10.2196/29614