Patient health data is sensitive information and protected by various laws such as the HITECH act and HIPAA rule. Healthcare entities, doctors, nurses and other employees are bound to protect patient data and ensure that it remains confidential. Patients themselves are worried that sharing health information (such as a diagnosis of mental illness) can lead to loss of job opportunities or healthcare benefits.
One of the reasons why the use of social media is discouraged within the healthcare system is because it is difficult to control the spread of information through social networking sites. Websites such as Facebook or Twitter are not covered by the HIPAA rule and information posted on such networks may be accessible by an authorized users, unintentionally or deliberately. This is also why sharing of health information through EHRs has received a lot of attention in the meaningful use program.
In spite of the anxieties regarding privacy of health data, two recent surveys have found that 94% of patients are willing to share medical data if it helps doctors to provide better care or to provide support to patients with similar conditions (Surveys conducted by CRNRC and PLM, March and October 2012). 84% of patients would even be willing to share their medical data (anonymized) with pharmaceutical companies to improve drug research.
These numbers seem to contradict patients’ claims that they are worried about privacy issues. However researchers speculate that this may be because many patients realize that the benefits of sharing information outweigh the detrimental effects. It appears that patients are concerned mainly with how their data is being used and who can access it, not that it should be kept under lock and key.
For example, a patient diagnosed with cancer may be willing to share his medical data with doctors or drug companies. At the same time, he may not want his colleagues or boss to know about his illness or for his children to find out about it from Facebook. Some people diagnosed with terminal or life altering illnesses have even opted to share their struggles with the disease on blogs or online journals.
At present there are no laws governing the use of medical data posted on social media by patients themselves. Although marketers are required to obtain consent before collecting information, many of them pose as users and are not prosecuted for violating the website’s terms of service. However, the role of the Internet in people’s lives is growing rapidly and more consumers are becoming comfortable with sharing information online. Pretty soon, nations may have to consider implementing laws which protect medical data on social media as well.