Update: The idea has advanced in the comments – be sure to read them.
There’s a Twitter discussion bubbling right now about a “Green Button” idea that was proposed informally last year at HealthCamp SFBay. Here’s a link to our comments about it two months ago.
About the idea:
The idea is to give patients a chance to “Donate My Data” – to be a “data donor,” analogous to an organ donor, if they want to.
Why? Because a main obstacle to developing good personal health software is that developers need real clinical data for test purposes.
Example: long-time readers will remember way back in 2009 when my hospital sent insanely bad insurance data to Google Health. I later learned that insurance data is commonly crazy. So I concluded that they must not have had the opportunity to test it with real patient data – and I imagine a major reason for that would be the logistical pain of getting all the authorizations from patients to satisfy HIPAA privacy rules, and who knows what else.
This #GreenButton idea would bypass the whole issue by having patients say “Here – take my data.”
(Note: apparently something else was proposed as a different green button. That’s not this one.)
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.
http://healthcaresecprivacy.blogspot.com/2009/10/de-identification-is-highly-contextual.html
When the push method is a Health Information Exchange, one could use the existing standards for consent to ‘authorize research project X’.
http://healthcaresecprivacy.blogspot.com/2010/03/consent-standards-are-not-just-for.html
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).
Thanks for clarifying what GreenButton is. 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. So, there is experimental efforts. Given time these experiments will shakeout the bugs/issues into solutions.
Great comment, John – thanks!
I like the idea of coming up with a different term. I’m working on something – be right back.
Here’s one idea – in a comment I can’t make it small enough, but this is what it might look like:
But your comment made me realize, maybe we don’t want this to be a “verb” button (like the Blue Button “Download My Data”), especially since this couldn’t be a one-click button as Blue Button is – this needs to take people to a page where they learn more.
So instead of it being a verb, how about if we make it a Call To Action button:
Thoughts, all?
I am not in agreement with the concept of “donate my data”. This shouldn’t be analogous to “donate my organ” for the following reason: once you donate your organ you’ve lost all control of what happens with it. With health data, it should be different. I think that “Share My Data” is a more appropriate way to describe what’s being talked about here.
This is at the core of participatory medicine, where we all agree that sharing, with all the parties we chose, is of great value. Sharing means you remain part of the process of what’s being done with the data and as such you remain engaged with both the process and the results.
We fought hard, for many years, to gain complete access to our data, which should have been ours to start with. Let’s not give it away so easily, but let’s share all or part of it. Let’s make sure sharing health data becomes a new normal in the US.
Gilles, I love it and prefer it! “Share my data”! Brilliant.
The “Call To Action” version would simply be “Share Your Data.”
The reality is that a research project that has ‘seen’ your data ‘has’ your data. So, to reflect reality we really should not imply that you as a patient can tell the researchers to ‘forget’ what they have seen.
No researcher would ever want your data if you could rescind use at will.
Bearing in mind what tends to happen to data once it is out in the wild, I would prefer a “Share and Monitor My Data” system so that the control is explicit, not implicit. I agree that sharing one’s data can’t be revoked mid-stream in a research project. What patients want is a reasonable understanding of how long the data will be used, how it will be used, and what is done with it post-study. These are not extraordinary requests.
Good summary idea here. Have any of you checked out the UK Government’s “MyData” programme? They recognise the need for both encouraging organisations to release data back to its owners and also the developing market for personal choice decision tools i.e. Personal Information Management Services. http://ctrl-shift.co.uk/shop/product/53
As far as Lifetime Health Diary is concerned, a uniformly recognised data standard with security and a logo helps reassure our users – please continue developing the Green Button.
Have any of you taken a look at Mydex? http://mydex.org/
A few years ago I began experimenting with a site (“http://www.pcir.org/”) where patients could contribute their images (from x-rays, CT scans, etc.) for research and development, and I struggled with the concept of the contributor retaining control versus relinquishing it, and came to the conclusion that a donation (irrevocable) to the public domain was a viable approach, even if it might put some folks off contributing; I drafted an initial agreement to that effect.
I really haven’t followed through on this project or had the process or agreement legally reviewed for validity, though the test site is functional. Other projects for patients to contribute images have taken a more formal approach (e.g., see the LCA and Kitware’s “http://www.giveascan.org/”).
The idea by the way, was not to depend on the provider to contribute the data when authorized by the patient, but rather to have the patient contribute directly, since there may be little incentive for providers to do the work.