Mother of All HMO's: Kaiser Permanente will soon have a data base of patient information that will be the envy of all insurance companies:
The health care company Kaiser Permanente announced Wednesday that its researchers had begun a study into the complex interplay of genetics, environmental factors and lifestyles that cause many common diseases.
Kaiser is sending detailed surveys to its two million adult members asking about their habits, family medical histories and many other factors that influence health. In a second phase it hopes to start next year, Kaiser will ask members to donate genetic material through cheek swabs or blood draws.
The plan is to combine that information with the company’s medical history records in a database that researchers can use to gain a deeper understanding of disease causes and develop treatments.
Actually, they're gathering the information for epidemiologic purposes, but they are, first and foremost, an insurance company. Wonder what impact their findings will have on their premiums? posted by Sydney on
2/15/2007 09:14:00 AM
There is absolutely no way I would give them either the information or the biological samples. These can't be anonymous, or else Kaiser wouldn't be able to tie it to the medical record. The only way there could possibly be protection of the study participants is to duplicate their medical records and purge any identifying information. Not likely.
I hope the ACLU is all over this. There's no way our IRB would ever let this one fly.
This type of health study is not new, just new for Kaiser. I have been part of the Nurses Health study (Harvard) for 2 decades!
LOL at ~~~> "I hope the ACLU is all over this" ... NO ONE is part of the study without their knowledge.
You would not believe the amount of protective hurdles that any medical study must go through ... believe me, I work for Kaiser and have done patient research for Kaiser ... it is completely "lawyered-up".
valerie Yes, I would "believe the amount of protective hurdles that any medical study must go through ... " since I have been a primary investigator in Phase II drug trials and survey-oriented research, and am certified in the ethics of human experimentation.
The fact that Kaiser is "lawyered-up" is not reassuring at all. Why would Kaiser need to be "lawyered up" in the first place- except to protect their own interests? An instiution doesn't run to lawyers to determine if their actions protect patients, they have it reviewed by their IRB. And who is Kaiser's IRB? More Kaiser people? Again, the conflict of interest here is tremendous and Kaiser should definitely not have used their own IRB, if they used one at all, which we don't know.
The big difference between the Nurses' Health Study and this is that Harvard is not insuring you. Harvard couldn't care less what your medical conditions or family history are, except as it relates to the study. Furthermore, all your data in the Nurses' health study is purged of your personal identifiers- you're literally just a number.
Kaiser, however, has a vested interest in finding out every detail about a person's history. Based on what they find, they could retroactively deny insurance because a person has failed to disclose a condition, they could raise premiums because of health or family history. In fact, they have a track record of doing exactly that.Kaiser has to know the patient's identity to find the chart & medical history- they even said they were going to do this. A person is not anonymous in this study. This is a really big no-no in the world of human experimentation. The principal investigator may believe that information won't be used against the patient, but some risk adjuster somewhere in the organization may think otherwise. Risk adjusters do not normally get a lot of education in medical ethics. The potential for harm to the study paricipants is very real.
Furthermore, just because people have given their consent doesn't mean they know what they're consenting to, or that they can consent to anything they want. There are protections in place to keep people from being harmed in any way by human experimentation. The question is- has Kaiser put these protections in place?
Valerie, you work for Kaiser. They pay you to think how they want and maybe even write this post supporting their new program. Insurance companies are in only one business: the business of making money. And as long as companies can pick and choose their patients in the US because we lack universal health care, the data being collected is for that. To better screen the people they are insuring.