Patients may battle over data rights
In healthcare, virtually nothing is black and white. From Obamacare to varying payment and care models, healthcare issues live in the land of gray and opaque where dissenting opinions reign. The idea of patient privacy and consent proves no exception.
At the September HIMSS Media/Healthcare IT News Privacy and Security Forum in Boston, patient privacy advocate Deborah Peel, MD, of Patient Privacy Rights, and UPMC Insurance Services Division Chief Analytics Officer Pamela Peele took the stage to debate the highly-contested issue of whether patients should have full consent over how and with whom their personal health information records are shared.
Pamela Peele, who maintains that multiple stakeholders have a right to access and use patient health information, framed her argument by starting off with an education analogy. Taxpayers and federal and state governments realized the economic value of educating the public and thus invested some $955 billion in funding education. "If you're not healthy enough to take that education into the workplace, what happened to our public investment?" asked Peele.
Public investment in healthcare proves even more striking, she added. Federal and state healthcare expenditures are currently pegged at nearly $3 trillion, with a recent Thomson Reuters report showing that the system wastes $700 billion a year. That's a form of the public's investment, and "there may be other stakeholders who have property rights to these data," said Peele.
"How do we judge whether or not we're delivering healthcare (effectively)?" asked Peele. "We need to be able to see this type of information on a personal health record in order to understand the (ethics) and safety and what we're doing with our healthcare dollars."
Patient Privacy Rights' Deborah Peel disagreed. Failing to give patients full control over their health records is first bad news from an economic perspective.
"Forty to 50 million people a year do one of three things: avoid or delay diagnosis for critical conditions like cancer, depression and sexually transmitted diseases, or they hide information," said Peel. "There's the economic impact of having a system that people don't trust."