“People Can Opt Out of Listing STDs, Abortions in Gov’t-Mandated Electronic Health Records, Patrick Kennedy Says” was the heading of an article in the US CNS News from September 28.
“So, obviously, for the full effectiveness of the person, it’s to their benefit to have everything on a record, but it’s going to be totally up to the individual,” said Kennedy. “We’re not going to get people to fully buy into this if they don’t feel comfortable with the record–and the one way to not make them feel comfortable with the record is to force everything on them and say, ‘This is a mandate, you’re going to have to do this or that.’ Because if that happens, then people aren’t going to want to buy in and the system’s not going to work.
“So what’s going to happen is this is going to be someone’s–people’s opportunity to choose, because they are going to know there are safeguards, and I think over time they are going to get more and more comfortable that this is in the best interest of them and their personal health,” said Rep. Kennedy. “But absolutely, we are going to make sure that’s it’s all up to the individual, because we are not going to get widespread adoption if people don’t feel that their privacy is protected. Privacy is the cornerstone of making sure this thing works.”
Is withholding information for privacy’s sake the right approach for a problem that should have been solved in the very first stage of designing an EHR? Essential to an EHR is that it holds ALL medical and health related information about a person. If this information is sensitive, the design of an EHR should be, no, must be, that the patient can indicate this and put that information in a so called “sealed envelope”.
For a long time I have been warning about the consequences of the implementation of an EHR. The citizen is hardly aware which information is available about him at the supermarket, the credit card company, the bank, the fiscal authorities. But with the implementation of an EHR he will suddenly be confronted with a wealth of information that almost certainly will also contain sensitive elements. We will have to help them to manage this information both mentally and physically.
Which brings us to one of the essential aspects of the ownership discussion. A person should have the right to indicate which person will have access to what part of the information in an EHR. And the patient should also have the right to exclude certain information from any person having access to it. However, even when in a sealed envelope the information is still present in the record. In my opinion, in case of emergency even a sealed envelope should be opened.
This aspect of an EHR must be part of our discussion with the WHO on the guideline on Patient Record Access which ICMCC proposed. It should be defined which kind of information can be put into a sealed envelope (I can imagine it would be certain STDs, abortion, certain (past) mental problems), but also under which circumstances that envelope can be broken, e.g. emergency hospitalization. The patient should be able to leave instructions within the sealed envelope on how certain elements should be handled.
Ashley Katz’ remark:
It is assuring to hear that the congressman’s intent is to ensure people can choose what information would go into an EHR versus mandating all data be dumped in without a patient’s consent.
shows IMHO a wrong approach. The patient should give his consent on how the data is used, not on which data is stored.
Excluding information from your record is the wrong way. Congressman Kennedy should focus on security standards for EHRs and on strong access rules with the patient in the driver’s seat. Advising the citizen to exclude certain information shows lack of trust and confidence in a system you want to install.
How are we going to convince the citizen to use an EHR to its full extend if we send out signals like these?
Kennedy’s argument that “this is totally going to be up to the individual” is a possibly misleading way of playing the patient-centric card.. I can’t tell my bank to stop registering that my account is in the red or my credit card company that I am in debt. We even have accepted that others can see our credit status. I recognize that certain health information might be more sensitive than even the worst credit card debt, but it should be present so it can be used in emergency situations.
Just one example. An HIV patient wants his status to be excluded from his record. He also goes out of his way to avoid his medication to be registered in his record. One day he/she is carried into an ER in a coma. Had the HIV status and the treatment details been contained in the record, although “behind closed doors”, it would be available and might be more than essential in decisions to take in this emergency. Not having that information might cause more than serious problems.
This proposal by congressman Kennedy might also have unexpected legal repercussions. If excluding information from a record becomes accepted practice, many legal cases concerning malpractice might strand on the accusation that the patient has withheld information which might even make him the target of a law suit.
I do understand the reason why Patrick Kennedy made this proposal, but it should not be about excluding information. The discussion should be about access.
Lodewijk Bos
Good point and well said.