Maine, Massachusetts, Minnesota, New Hampshire and Vermont all have a version of this. Tennessee is next. You all need to be looking to see if your states are considering such a database.
Of all the Orwellian nightmares people have suggested you be concerned about, it would be difficult to find one more universally despised than the idea one’s medical records are available to the state. The potential for abuse and discrimination under such a scenario are legion. Some possibilities are obvious. Like the discrimination against a woman because she might become pregnant, imagine the potential impact on your credit, work or chances for a promotion because of your medical history were it to be known. Others are more fantastic and insidious, bordering on science fiction like the movie “Gattaca”, where all of society – social position, who you marry and your value as a person are based, not on your character but on your genes and how they impact your health. The point being, knowledge of and control over information, especially medical information, carries such potential for abuse and is so personal it has traditionally been held as the most private of private information.
But for how much longer?
TN House Bill 2289 (HB2289) and Senate Bill 2239 (SB2239), according to the state’s website, are innocuous bills on insurance, medical fees and accreditation typical of the uninteresting legislation passed nationwide. Reading the text of HB2289, it is anything but.
It establishes an All Payer Claims Database (APCD). The APCD requires private insurance companies to report to the state the details on the claims they process. For perspective, one particular Tennessee insurer processes 32,000 of those details every hour. That’s 250,000 details per day about private citizens the state wants turned over to them.
In fact, there are over 6000 details which might be reported about you under HB2289 including data on prescriptions, medical conditions, sexually transmitted diseases, surgeries and more. If I know Government, 6000 is nothing but a good start!
Your file is cumulative in nature, established for you with future medical details added over time. Older folks might not have large files, children would have their entire life’s medical history recorded. The Government is not asking you for it. This is not voluntary. The information is being legislated away from your control. You cannot opt out. You are not even a part of the process. The bill requires your insurance company to report to the Government all the things it did for you as its customer. Just because the Government wants to know.
The bill assures Tennesseans their data will be kept private. But from whom? While you can’t get your neighbor’s data, the state can share data with a host of entities. HB2289 promises to abide by existing HIPAA laws. But the National Institute of Health’s own account of how such data is handled notes while HIPAA laws require the removal of 18 separate personal identifiers from data before it can be released without specific authorization, such personal identifiers may be released
To health oversight agencies for oversight activities authorized by law that are necessary, for example, for the appropriate oversight of government-regulated programs. For example, because Office for Human Research Protections (OHRP) is a health oversight agency under the Privacy Rule, a covered entity may disclose PHI, without Authorization, to OHRP for purposes of determining compliance with the HHS Protection of Human Subjects Regulations.
All it takes is being designated an oversight agency and they can get all the data they want about you. Interestingly, HB2289 calls for the formation of a Tennessee Health Information Committee. Its duties, responsibilities and functions are not defined but it’s not hard to imagine it being given oversight authority.
There are fiscal and quality of care issues to consider as well.
Compliance with the legislation will require more personnel and time. That cost to doctors and insurers will be passed on to consumers in the form of higher costs and premiums making health care even more expensive. The bureaucracy to establish and manage this will increase the size of the state Government. More Government means more taxes or cuts in other services to pay for it.
Many people are already uncomfortable sharing intimate details of their life with relative strangers, even if it’s their doctor. Common sense tells us people already omit information or lie in response to diagnostic questions out of fear, embarrassment and the like. What happens when it becomes known that faceless bureaucrats have access to your health care records? What happens when someone gives a wrong answer out of fear and gets a prescription that interacts badly with another med or undergoes a procedure a doctor would never recommend if he knew the truth?
These concerns are nowhere near the full measure of just how bad this legislation is. But the solution is simple – contact your legislators. Politely tell him or her, in no uncertain terms, you consider your medical information private and you expect it will be kept that way. Politely, clearly and firmly make it known you are requesting him or her to vote against HB2289 and SB2239. Let them know you will be following up to see how s/he votes and that the matter will be a factor in deciding how you will vote. You can find your Representative and contact him or her here. Your Senator’s information is here.
Then tell your family, friends, neighbors, church members, and co-workers about HB2289/SB2239 and suggest they do the same. Give them the link to this post and return often for updates and for more information about what is happening. See you then.