New data, self-policing raise more questions than answers

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I've expressed concern before about research on electronic health records that misses the mark. But often the problem lies not just in the spin given to a study but the questions it engenders.

Just look at this past week. The Office of the National Coordinator for Health IT released a data brief that outlines the socio-demographic disparities among consumers regarding access and use of their online health information. It has been well established that the more a patient knows about his or her care the better. The data brief shows, however, that these disparities continue to plague the industry. White, more affluent and better educated individuals were significantly more likely to be offered online access to their records, as well as use health IT resources like email and text messaging to contact their providers.

What the data brief doesn't address is why these disparities exist. Is it because providers don't believe that the lower income, less educated, non-English speakers would be less likely to take advantage of online access? Is it because it's more of a burden on the provider and/or the patient to do so?  

Moreover, ONC said it will continue to monitor these disparities, but didn't say how it would try to reduce them. Even though this information is not new.

Instead, we get data that individuals whose providers had an EHR were offered online access to their medical record at greater rates than those whose providers who did not have an EHR. Well, sure. It's hard to have online access to one's records when they're not in electronic form to begin with.

Then we have the Electronic Health Record Association's updated vendor code of conduct. The code, first released in 2013, has been revised to reflect how the industry has "evolved," according to EHRA. The new code of conduct addresses the usability of EHRs, clarifies transparency on payment models for interoperability and highlights opposition to data blocking. That's all good.   

But the code is still voluntary. Who's going to enforce it?  If a vendor doesn't sign off on the code, are there repercussions? What does it really do for the industry besides give the vendors some positive PR? 

And one has to ask (again) if the new code of conduct goes far enough. For instance, while it doesn't specifically promote gag clauses on providers regarding discussing patient safety issues with EHRs, it still doesn't allow for open discussion about them. Providers are allowed to report safety issues to vendors, and in "appropriate venues." What is an appropriate venue? And who decides that?

And now we have a "pledge" by vendors and major providers to improve data sharing by allowing easier and more secure access of information to consumers, agreeing to implementg national interoperability standards and not to engage in information blocking. That's great, and makes for a good sound bite, but how will it work? And are the code and the pledge merely attempts by industry--and the government--to appear to collaborate and police themselves merely to avoid new laws requiring more onerous obligations?  

These developments are interesting, but they should not be taken at face value. They raise a lot of questions that people should be asking; questions that must be answered. - Marla (@MarlaHirsch and @FierceHealthIT)