Deborah C. Peel, MD is the world’s leading advocate for patients’ rights to control the use of personal health information in electronic systems. She is also a practicing physician and Freudian psychoanalyst. She became an expert and privacy warrior to stop patients from being harmed. The lack of health privacy causes millions of US citizens to avoid early diagnosis and treatment for cancer, depression, and STDs every year.
Her passion is informing the public about privacy-enhancing technologies and the major fixes needed in law and policy, so they can join the battle to restore our civil and human rights to health privacy.
Before you think this isn’t a big deal, think again. Hospitals have begun creating profiles on current and potential patients by tracking their consumer data to identify when a person may become ill.
Information compiled by data brokers from public records and credit card transactions can reveal where a person shops, the food they buy, and whether they smoke. The largest hospital chain in the Carolinas is plugging data for 2 million people into algorithms designed to identify high-risk patients, while Pennsylvania’s biggest system uses household and demographic data.
Carolinas HealthCare System operates the largest group of medical centers in North Carolina and South Carolina, with more than 900 care centers, including hospitals, nursing homes, doctors’ offices and surgical centers. The health system is placing its data, which include purchases a patient has made using a credit card or store loyalty card, into predictive models that give a risk score to patients.
While all information would be bound by doctor-patient confidentiality, he said he’s aware some people may be uncomfortable with data going to doctors and hospitals. For these people, the system is considering an opt-out mechanism that will keep their data private,
How about just making the system opt-in? Anyone who wants to be spied upon and have others making their lifestyle decisions for them can participate. Those who value their privacy wouldn’t have to do a thing.