Tonight on our regular health and social media Twitter chat #hcsmanz we discussed patient information and the role of social media. We discussed that there were a myriad of benefits with emerging techologies but also noted they do have down sides
One area that did arise was the area of health information quality. As information sources proliferate and health consumers go to the internet to search for health information the area of quality becomes increasingly important. The other area was that of consumer privacy.
With those two areas in mind I then did some further research and only recently Information Week wrote an article entitled Healthcare Social Media Sites Neglect Privacy Protections. The article discussed a study called “Social but safe? Quality and safety of diabetes-related online social networks,” It was conducted by researchers in the Children’s Hospital Boston informatics program who performed an in-depth evaluation of the sites and found that only 50% presented content consistent with diabetes science and clinical practice.
The study examined four key factors:
- agreement of content with diabetes science and clinical practice standards,
- practices for auditing content and supporting transparency,
- accessibility and readability of privacy policies, and
- the degree of control members had over the sharing of personal data.
The study revealed
- sites lacked scientific accuracy and other safeguards such as personal health information privacy protection, effective internal and external review processes, and appropriate advertising.
- misinformation about a diabetes cure was found on four moderated sites. Additionally, of the nine sites with advertising, transparency was missing on five, and ads for unfounded cures were present on three
- technological safety was poor, with almost no use of procedures for secure data storage and transmission. The study found that only three sites support member controls over personal information. Additionally, privacy policies were difficult to read and only three sites (30%) demonstrated better practice, wrote the study’s authors.
The research was published in late January in the Journal of the American Medical Informatics Association.