Although the “P” in HIPAA stands for portability, the question of privacy and data protection is a big topic in healthcare. While at the same time we need to protect all personal health information for patients, individual patients have the right to share that data how they wish. New legislation on data interoperability seeks to break down silos and data blocking to enable patients and providers to have access to data to improve care. With this as the current situation in 2019, those interested in privacy should not miss Sarah Igo’s excellent history of privacy and policy “The Known Citizen.” We recommend this book to all data and privacy nerds. While not focused on healthcare, it provides a great primer on the evolution of privacy and technology’s ability to outpace our understanding and desires both to be known and to be forgotten.
The book kicks off with the advent of photography and the debate at the time about whether people own their likeness. (At the time they didn’t, and people found their pictures on boxes in the grocery store.) It details the evolution of thought, law, and popular sentiment in privacy, including the first ideas that patients have a right to privacy, championed by nurse Dorothy Smith in 1969, and institutionalized in the Patient Bill of Rights in 1973. The premise is that while the loss of privacy is required in the doctor/patient relationship and to deliver care, this doesn’t mean that all aspects of privacy should be ignored. “Arranging for privacy”: curtains, confidentiality, (robes that close at the back?), can created a zone of privacy around the patient and help preserve the individual’s dignity. Smith felt that this was the duty of the nurse, although now we see it as the responsibility of everyone in healthcare from the receptionist to IT.
Healthcare privacy is also touched on in the social determinants of health, and whether people receiving public aid should have their entire lives under the microscope, and again, in the introduction of internal review boards and ethics committees for medical research to protect patient/subjects from harm, but also from disclosure of private information without their full cooperation or understanding of its use.
While you may know Betty Ford for her disclosure of addiction and subsequent support of treatment, she is also responsible for destigmatizing breast cancer and showing that open discussion, and especially by prominent figures can drive public health agendas. After Ford disclosed her breast cancer and mastectomy in the media, there was a noticeable uptick in mammograms, and over 5,000 calls of support to the White House.
While healthcare is a small part of this book, the learnings from society at large, and the race between technology, sentiment, and legislation have great lessons to apply in healthcare. And interestingly much of the discussion we are having today about being known, has been going on for over hundred years, and the
“big data” discussions for at least 50 years. Finally, this book has the added bonus of a really interesting bon mot for your next cocktail or mocktail party: the first reality TV show was broadcast in 1973, on PBS of all broadcasters!