A survey entitled about the consequences of talking about your health on the web) highlights the way Internet users feel about how their personal health data is or may be used by others.
What worries patients most is not so much the general use of their personal health data as the fact that some organisations might violate its confidentiality, obtain unauthorised access or use it in an unauthorised manner. These fears emerge from a survey carried out by the Social Networks department at French higher education and research establishment Institut Mines-Telecom, in conjunction with health and wellbeing website Doctissimo, public relations agency LauMa Communication, health consultancy Patients & Web, Renaloo (an online community for people with renal problems) and Vivre Sans Thyroïde (a discussion forum for people suffering from thyroid problems), supported by a number of charities. The online poll, which was carried out between 17 April and 6 June, canvassed people suffering from chronic illnesses and their friends and families. A panel of 848 patients was selected from among people who had already posted, exchanged and stored data on their health or well-being on blogs, forums, social networks or via mobile health apps. Only 8% of the respondents stated that they were ‘very worried’ about the use of their data, 23% describing themselves as ‘somewhat worried’, while 43% said they were either ‘quite confident’ or ‘very confident’ regarding data use. In fact people seemed less worried about the actual use of their personal data than about what kind of organisation is using it. Some 39% stated that they feared their data could be used to their disadvantage by an insurance company, with 36% saying the same about their employer and 27% mentioning Health Insurers.
Confidentiality outweighs scientific progress
Fully 64% of those surveyed approved of their health information being used by public bodies in the public interest, but only 6% would accept this data being gathered by a private firm. Nevertheless, the majority of those polled seem to be aware of the potential usefulness of their data in assisting with scientific progress and some respondents saw a role for such personal data in helping to improve the services provided by health websites. These results may seem somewhat contradictory, but one consideration seems paramount: 70% of respondents felt that it is vital to be able to maintain anonymity on the social networks – i.e. that no connection should be made between the data gathered and the identity of the person posting it.
Towards greater transparency and better information for patients
Aside from purely digital issues, the survey reveals the need to give patients more information about ways of protecting their online data. In fact while some 34% of respondents actually believed that it is against the law to gather informal health information from the Internet or mobile health applications (mApps), a larger proportion think that their health data is constantly being analysed, either by software, or by actual people. According to e-Health lawyer Nathalie Beslay, who was recently interviewed by L’Atelier, one of the aims of health bodies in France is now to provide patients with better information. Some 70% of the survey respondents were in favour of creating a charter of good conduct and said that would make them more likely to trust the social networks. The charter would prescribe transparency measures when data is gathered, processed and used by websites and/or health apps.