Hi,
At the last quantified self conference, it became apparent to some of us who collaborate regularly with the e-patient and the QS communities that we needed to start defining how a good partnership with a doctor would look for those of us interested in quantified self.
There are at least two reasons that an e-patient who is quantting, or even just someone without a health agenda, might want to partner with a doctor for quantified self purposes.
The first is access. It is not possible to get certain medical measurement devices, esp those that continuously break the skin, without a prescription. A great example is the Dexcom 7 real-time glucose monitor. Some doctors do not understand why someone without diabetes might still want one.
The second is even more important: guidance. Especially those of us who are quantifying ourselves not to “optimize” or “discover” but to relieve pain or illness, we need help from medical doctors to interpret and direct our quantifying efforts. If we are looking for what in our environment given us migraines, for instance, we might like a doctor to take a look at our data, and suggest next steps.
Given that, we want to find doctors who are friendly to this process. Thankfully, we had some physicians in attendance, and it became quickly apparent that we needed to also talk about what responsibilities we had as patients in the “clinical quantifying” process.
During our session, we came up with several rough cornerstone principles. We think that these rough principles might, with input from both the QS and e-patient communities, form the basis of a document that would help us clarify exactly what we would hope for from doctors, as well as set our expectations for our own role as patients.
In order to facilitate a discussion between two communities at once around the rough draft that we created, we are using co-ment, which is similar to stet, the software used to comment on the GPLv3 license. Unlike a wiki it is specifically designed to deal with word-smithing issues from different perspectives.
Our document instance lives here:
[DEAD SITE] https://lite.co-ment.com/text/4kLfAIDu4Gr/view/
I would like to point out that this document -is not- intended to contain everything we would like to see change in our relationship with doctors. I think the e-patient whitepaper is a wonderful effort to address the kinds of fundamental changes, and for the QS crowd, I suggest that it is worth a read: [DEAD LINK] http://e-patients.net/e-Patients_White_Paper.pdf
The only “editorial” role I feel should be played is to ensure that this document does not grow into something like the e-patient white paper. To be effective, we really need to focus on limiting the scope of this document to what we need from doctors in order to effectively quantify ourselves, rather than -everything- we wish doctors would change. A good indication of success in my mind will be a document that is not too much longer than the one we already have, which is blissfully short.
I also have very limited time to support this process myself, and I have limited commitments from Deb Linton and Anne Wright (who prompted me to send this out) to take over from an “editor” role. No matter who is editing, this needs to be a community-driven process that involves both the QS and e-patient communities. (essentially, this issue -is- the nexus between our communities)
With that in mind, please comment on the document… -on the document only-. If you want to participate in the meta-discussion for this document, we already have a google group: http://groups.google.com/group/quantified-doctors This way we can fairly balance input from both communities. This is being cross posted, after all, so if you respond here I will just tell you to repost in the right place. Again the URL to comment on the rough draft is [DEAD LINK] https://lite.co-ment.com/text/4kLfAIDu4Gr/view/. Anyone is allowed to comment, it is a public document, and if you have a response to it after giving it a read, then your response matters, go ahead and comment. Also remember that I by default I operate on the open source process. That means you can flame this document and I will consider that normal, welcome and a legit contribution. It also means that I will interpret silence as consensus. When people stop commenting, that means the document is done.
Either I, Deb, Anne, or someone else who feels passionate about this (looking for volunteers) will announce new versions of the document on this forum and on the Society for Participatory Medicine (the epatients) members mailing list on a somewhat regular basis. (By ‘somewhat’ I mean: “its ready when its ready”). After we get this done, we will decide on a home for the document and consider creating more content and perhaps even other functionality around the quantt-friendly doctor concept.
Thanks,
Fred Trotter,
hacking open source health software.
https://fredtrotter.com