Patient Benefits vs. Privacy Concerns
It might have been a mission with merit, but its value is obscured when contemplating the potential for problems. Those problems have actually become a reality.
As reported by Christina Farr on CNBC, Facebook was talking to various hospitals and medical groups about sharing data utilizing the social networks of the providers’ most vulnerable patients. The objective of the plan was to construct profiles of people that combined medical conditions obtained from the health care providers with social and economic factors obtained from Facebook.
The plan would have maintained anonymity by making personally identifiable information, such as the patient's name, obscure. Facebook was going to use a technique called "hashing" to match individuals from both sets of data. The information gathered “would have been used only for research conducted by the medical community, to help the hospitals figure out which patients might need special care or treatment,” according to Farr.
Then came the news of the Cambridge Analytica data leak scandal. Cambridge Analytica, a political research organization, is reported to have gotten access to detailed information about Facebook users without their permission and attempted to use this data to target political ads to these users. As many as 87 million people's data might have been shared this way, according to Facebook, which has instituted new privacy policies and controls designed to limit the type of data collected and shared, as well as how data can be utilized.
In the face of these concerns, the medical data sharing proposal got stalled in its planning phases and has been put on hold. According to a Facebook spokesperson, "This work has not progressed past the planning phase, and we have not received, shared, or analyzed anyone's data."
Facebook had been planning to “combine what a health system knows about its patients (such as: person has heart disease, is age 50, takes 2 medications and made 3 trips to the hospital this year) with what Facebook knows (such as: user is age 50, married with 3 kids, English isn't a primary language, actively engages with the community by sending a lot of messages),” according to Farr. Then the project would determine whether this information could assist with patient care. If Facebook could figure out that an elderly patient had few close friends or community support, the health provider could make the decision to deploy a nurse to follow up after a major surgical procedure.
According to Cathleen Gates, the interim CEO of the American College of Cardiology, "For the first time in history, people are sharing information about themselves online in ways that may help determine how to improve their health. As part of its mission to transform cardiovascular care and improve heart health, the American College of Cardiology has been engaged in discussions with Facebook around the use of anonymized Facebook data, coupled with anonymized ACC data, to further scientific research on the ways social media can aid in the prevention and treatment of heart disease—the #1 cause of death in the world. This partnership is in the very early phases as we work on both sides to ensure privacy, transparency and scientific rigor. No data has been shared between any parties."
However, the project is on hold for the time being. Facebook said it is focusing on "other important work, including doing a better job of protecting people's data."