One guarantee in the healthcare sector is that when it comes to personal health information (PHI), there is no lack of issues and pundits to discuss security and privacy of such information/data. If one does not jump up and down bleating on about the sanctity of PHI and the need to protect it at all costs, well then you may be labeled a heretic and burned at the proverbial stake.
Now don’t get us wrong. Here at Chilmark Research we firmly believe that your PHI is arguably the most personal information you have and you do have a right to know exactly how it is used. Whether or not you own it remains to be seen for we have seen, read and heard on more than one occasion – some healthcare providers believe that it is their data, not yours, and may only begrudgingly give you access to some circumscribed portion of your PHI that they have stashed in their vast HIT fortress, or worse, scattered in a number of chart folders.
But where we do differ with many on the sanctity of PHI is that the collective use of our de-identified PHI on a community, regional, state or even national level can give us some amazing insights into what is working and what is not in this convoluted thing we call a healthcare system in the US. Using PHI for such purposes needs to be strongly supported. Unfortunately, we do a terrible job as a country in educating the populace on the collective value of their data to understand health trends, treatments and ultimately ascertain accurate comparative effectiveness. This leaves the door wide open for others to use the old FUD (fear uncertainty and doubt) factor to keep patients from actively sharing their de-identified PHI.
One of the more popular and edgy online dating sites, OK Cupid, has done some great things with the data they collect on their users. They take the vast amounts of data they collect and do some pretty fantastic and fun (fun is good, fun is engaging) analysis to understand their users and what makes them tick. For some reason, the healthcare industry just doesn’t do fun things with the data – always so morbid!
Imagine if we could collect similar data on health, or heck, even better, imagine taking some of OK Cupid’s findings on body image and sex drive, (see chart 7 & 8) and using that to educate the public on why it may be in their best interest to keep their weight in check. Sure doesn’t seem like the threat of diabetes, heart failure, etc. is doing the trick to lower obesity rates, maybe hitting them below the belt will work.
Finally, a “meaningful use” for “big data”!