Responding to Americans’ growing reluctance to share health data and unresolved tension over eroding personal privacy, the American Medical Association (AMA) today issued new privacy principles supporting an individual’s right to control, access, and delete personal data collected about them. Using the new privacy principles, the AMA will actively engage the administration, Congress and industry stakeholders in discussions on the future direction of regulatory guardrails that are needed to restore public confidence in data privacy protections.
“Patients’ confidence in the privacy and security of their data has been shaken by repeated technology sector scandals and the wired economy’s default business model that quietly gathers intimate glimpses into private lives - often without patient knowledge, consent or trust,” said AMA President Patrice A. Harris, M.D., M.A. “As a result, patients are less willing to share information with physicians for fear that technology companies and data brokers will have full authority over the use of their indelible health data. Unfortunately, recently finalized federal regulations will make this more likely to happen.”
A 2019 study by Rock Health and Stanford’s Center for Digital Health shows consumers have become more reticent when it comes to sharing their health data. Out of all health care stakeholders, consumers were most willing to share their health data with physicians, but that sentiment has slipped since 2017. Consumers were least willing to share their health data with technology companies whose business models and technical capabilities are reliant on it.
“The AMA privacy principles set a framework for national protections that provide patients with meaningful control and transparency over the access and use of their data,” said Dr. Harris. “Preserving patient trust is critical if digital health technologies are to facilitate an era of more accessible, coordinated, and personalized care. To restore confidence in data privacy and security, the AMA privacy principles promote individual rights, equity and justice, corporate responsibility to the individual, applicability and federal enforcement.”
Recent events have highlighted how critical it is to have clear rules of the road with respect to data use. There is unprecedented reliance on remote care technologies, like telehealth, to help people avoid leaving their homes during the COVID-19 pandemic. But both patients and clinicians are justified in questioning how platforms will secure and protect the information exchanged during the virtual visits.
Similarly, many private and public efforts are underway to collect, use, and disseminate public health surveillance data to help inform public health officials and policymakers about the spread of the novel coronavirus. These efforts are critically necessary but must address questions about how best to handle the data both during collection and once the pandemic has subsided.
The AMA believes the primary purpose of boosting guardrails around data use is to build public trust, not inhibit data exchange. The AMA privacy principles seek to promote individuals’ confidence in institutions. The more confidence people have in how entities will use and exchange data, the more willing society will be to participate in data donation efforts.
“The delicate balance between privacy and data protection on the one hand, and the protection of public health on the other, presents a number of challenges,” said Dr. Harris. “The AMA’s privacy principles provide a meaningful framework to guide data collection efforts, privacy legislation, and public health plans to help ensure that steps we take now will not unfairly and disproportionately impact vulnerable populations down the road, but rather will instill trust in the systems we establish to help keep people safe and healthy.”
For over a decade the AMA has advocated for the fundamental right of patients to access their complete medical record and promoted the use of health data to enhance patient experience, improving population health, reducing costs, and improving the work life of health care providers. For instance, the AMA recently released a Patient Access Playbook to help guide physicians and their staff on best practices for providing patients their medical records. The AMA will continue to work with the administration and Congress to identify to improve federal policies.
