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Cross-posted from the ICMCC blog, a post by its chairman, Lodewijk Bos, a Dutch cancer patient who is a great advocate for information, technology, and patient engagement. The ICMCC news feed is a terrific daily compilation of health IT news. 

A long-time advocate for patient empowerment – from his own experience beating unbeatable odds – Lodewijk is not happy with the position taken by the American Hospital Association to stall giving us our medical records.

AHA – Erlebnis [“epiphany”]

I am not a US citizen, so I can’t officially react to the latest news from the US patient access front nor put my opinion on the “protest page“. What is going on. First see this post from the Healthcare IT News and following see the post my friend e-Patient Dave wrote about it.

When Dave wrote me a short mail about it, I decided that I should write this post. First, I am president of a foundation that deals with the social, societal and ethical implications of computing and networking (Compunetics) in medicine and care. Second, the ICMCC foundation started it’s first internet appearance with the Record Access Portal we initiated in 2006 followed with a recommendation to the WHO on patient record access in 2007.

When I read the position of the AHA on patient record access I was shocked. I thought the original 4 days for delivering patients access was already a slow process, the now proposed 30 days are a gotspe [a grave insolence]. Unfortunately I have to generalize here (as Dave said in his post, “not all hospitals believe what the AHA letter says”), but the US hospitals are rushing to gather the incentives for implementing EHRs and now with as many words tell their patients they are not able to use them. If you use an EHR as intended, all patient data should be present in one, virtual, document, which should be available in its entirety within 24 hours. So that is why I already had problems with the 4 day term.

The fact that the AHA now says that it is not feasible to deliver in such a short notice and that they need 30 days is unbelievable. To quote Dave once more:

“Here’s what that means, specifically: when you or a relative is discharged from the hospital, instead of giving you your information promptly – to inform and empower good home care – they want to be allowed to spend that whole month gathering the information that might let you prevent readmission.”

With this the AHA admits that it does not know what an EHR was and is meant for – to gather patient information in an efficient way. It looks as if they try to find ways to stick to their old sense of ownership of the information, at the same time realizing they might be losing that battle and therefore extend the delivery time to enable themselves to avoid any possible tort processes.

It might be advised to read the Hoffman paper (E-Health Hazards: Provider Liability and Electronic Health Record Systems) from November 2009.

There is little I can do except writing this blog post and give my mental support to all who fight against the AHA position in this discussion.

Lodewijk Bos
President ICMCC


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