The American College of Cardiology has defended its involvement with Facebook in a program that would match de-identified patient data with social media activity to develop cardiovascular prevention interventions for socially isolated people.
In a week in which Facebook came under intense scrutiny over its management of the personal information it holds on millions of users, the American College of Cardiology acknowledged that it was one of several healthcare groups involved in the planning stages of a data-sharing collaboration being developed by the social media giant.
The Facebook research project – now on hold – proposed to use data matching to identify patients with social factors that increase the risk of cardiovascular disease, such as living alone. If successful, the program would allow hospitals to offer pro-active interventions such as sending a nurse to the home of a patient.
According to a report on CNBC, Facebook has a healthcare data sharing project team led by interventional cardiologist Dr Freddy Abnousi, which has been pitching similar projects to other medical organisations including Stanford University School of Medicine.
The ACC’s interim CEO Cathleen Gates stressed that no data had been shared and the project was only in the early planning states, with the parties working on ways to ensure privacy, transparency and scientific rigour.
“For the first time in history, people are sharing information about themselves online in ways that may help determine how to improve their health,” she said.
“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.”
In a statement provided to the limbic, ACC president Dr C. Michael Valentine said the project had “halted” before it moved beyond the concept phase. However he did not confirm whether there were plans to resurrect it in the future.
“We approached these discussions as we would any other scientific, medical, or clinical research—with the understanding that to move forward research protocols would need to be in place to ensure consistent compliance with ACC policies, HIPAA regulations, the Common Rule which governs research on human subjects, and relevant ACC Institutional Review Board/Privacy Board decisions.”
“Protection of patient privacy has always been the ACC’s foremost priority when considering any research, including our discussions of potential scientific collaboration with Facebook,” he added.