Recently, in the Health IT Social Media Galaxy ( granted, a rather small galaxy), there has been much attention paid to EPIC CEO Judy Faulkner’s response to the proposed Health and Human Services (HHS) regulations—regulations which may make it easier for patients to access their health data, but which also may potentially makes patient’s health information more exposed online.
Some recent articles—none of which give you a warm fuzzy feeling of a healthy public-private partnership—include:
HHS Secretary Azar blasts Epic’s ‘scare tactics’ in opposition to data sharing rules
Epic may sue HHS over interoperability rules concerns, Judy Faulkner says
Epic CEO Judy Faulkner asks hospitals to oppose HHS’ interoperability rule
Now, certainly, there is much to learn from studying these interactions, including pondering who owns what health data, who determines what can be shared with whom, and what the various incentives and biases are for the different groups taking their various positions.
There is also some intellectual interest in just watching how this plays out.
For example, for those who remember the 90s, there is more than a little irony in Microsoft backing anti-monopoly regulations. And, whenever healthcare Big Data is involved, I am always curious about what Amazon is up to in the background, especially in the context of their Comprehend Medical product, which is their EHR data-mining and analysis tool.
But there is a fundamental issue being missed in all of this: What really is the relationship between data and health?
You see, we all seem to be working within the paradigm that more data will lead to better health, and a corollary of this paradigm that better access to this data ( by patients, physicians, or healthcare organizations) will also lead to better health.
I’m not sure this is true. For example, EHRs—an ultimate data sink if I have ever seen one—have been around for about 10 years now, but I haven’t seen a pandemic, an epidemic, or even a localized outbreak of health in the United States. (In fact, if you look at obesity as a proxy-metric for health, I think you could make a case that the health in the US has declined over the past decade.)
Similarly—although there are obvious exceptions—what usually determines improved health are behavioral changes, not more data and more information.
Don’t believe me? Consider smoking. =It was pretty well determined that smoking contributed to both cancer and heart disease in the 1960s, but even now—nearly 50 years later—we are still dealing with the ramifications of smoking, and it’s only been over the past several years smoking has started to decline in the US (however, there are still some countries where it is on the rise). To me, 50 years is a long time to move from the data, information, and knowledge that smoking causes significant health issues to the decline of smoking which will improve actual health.
Anyway, data, information, and knowledge may be necessary to improve peoples’ health (although even this may not always be true since habits can be modified without detailed knowledge), but it is rarely sufficient to improve health.
Rephrased—and as every practicing physician knows—there is a chasm between showing patients some information or data on why they need to change a certain behavior and then these patients going out and actually changing their behavior.
So, whatever side of the HHS regulation divide you may fall on, keep in mind that if the actual health of the patient is your concern, it may simply not matter.
(Image credit: ESA/Hubble & NASA, A. Adamo et al.)