Thursday, July 21, 2011

GreenButton - a bad Marketing term for a good idea

I understand that a new concept was presented to ONC today called GreenButton (see twitter #GreenButton). I reacted strongly to the terse twitter posts (like there is anything other than terse on twitter). This exposed that GreenButton is simply an effort to enable the patient to choose to have their data available for research. ePatientDave posted a blog article.

I think the concept is fantastic. I think marketing it as 'greenbutton' is a bad idea. From the discussions I have seen this morning, the concept is simply to enable the patient to be active in pushing their data into research, studies, teaching-files, etc; without defining the standards that would be used to do this push. Where as BlueButton was both a patient empowering concept with a defined quasi-standardized file-format that was totally different than any open 'standard'.

I think that the greenbutton (wow, hard not to use the marketing term) would need to be an opportunity for the patient to choose which research projects will get their data AND if their data needed to be de-identified. I suspect they will almost always want their data de-identified, and this is why I want the patient to choose each research project. Because successful de-identification can only be done when the context of the research needs are understood.

When the push method is a Health Information Exchange, one could use the existing standards for consent to 'authorize research project X'. The act of the patient 'pushing' the greenbutton will need to be captured as an 'authorization' anyway. The standards we have been working on for Consent are not just for 'Consent' as we know it in the USA, but rather are broad enough to handle any privacy policy (with some stepping stone restrictions).

I like the concept, lets figure out how to make it happen. There is lots of actual work necessary to see it through. In many cases research is being done, without empowering the patient. Some providers are already empowering their patients. Most PHR services enable this kind of thing. I am a 23andMe participant and very much participate in the 23andWe effort. So, there is experimental efforts. Given time these experiments will shakeout the bugs/issues into solutions.