I’ve just attended John Moore MD’s “defense,” as they call it – his presentation of the results from his PhD thesis project at the M.I.T. Media Lab.
The project has participatory medicine written all over it: it’s about
Developing the role of the patient
using an “apprenticeship” approach
to the patient/clinician relationship
enabled by technology that makes it easy
to stay aware of how you’re doing.
I hope to write more about it in the coming weeks, as I learn more and his thesis is published. For now, I want to start with a couple of quick notes:
- This project was about chronic conditions, to develop patient skills at self-management. (Specifically, Moore ran trials for diabetes and hypertension.)
- The “apprenticeship” model (specifically cognitive apprenticeship) strikes me as the most powerful and empowering approach I’ve seen to developing real competence.
- To develop competence at anything, any apprentice needs to know how they’re doing. This requires a new kind of data system. The open source platform CollaboRhythm was used to collect data and to host patient feedback apps, on smartphones, tablets, whatever.
- The results presented were impressive. He’ll share his whole slide deck later, but here’s one example: at Joslin Clinic, hemoglobin A1C improved 3% in 3 months. For comparison, the industry norm (standard of care) is a 1% improvement in 12 months.
- The increased cost in clinician time was just $200 per patient, suggesting that this really was transferring clinical value to the patient.
- I didn’t grab the numbers for the hypertension experiment but it too supported Moore’s thesis, that real clinical improvements can be achieved through health IT.
- The apprenticeship model reflects the idea that the patient’s own abilities get developed, then s/he achieves “master” status – and goes on to mentor other patients.
Much work remains to be done to see how well the benefit persists. I’ll post more information as I get it.
Again, what grabbed me – what made me sit right down and the reception and do this post – was the apprenticeship approach, supported by really effective use of data and tools to present it to patients in meaningful ways.
Note that CollaboRhythm is open source, which means all kinds of vendors can develop additions to it.
this ‘apprenticeship” may be a big step up if the patient is clueless and accustomed to leave it all to the doctors. But
for the e-patent who reads the web and the typical doctor
who doesn’t: ? Oh, I’d love to meet your wonderful doctors!
Hi Art – yes, the whole point of the apprenticeship is to develop competence in the patient. And the clinical trials reported in the thesis session provided evidence that in this case at least, it worked: the patients gathered competence to the point that it didn’t even cost much clinician time.
If the role to be developed is the “e-patient”, that is an adversary role, challenging the doctor for web corroboration. Is that really what the doctor will encourage and guide? I thought doctors abhor the web (‘you can’t believe everything you read’) On the other hand, if it gets the doctor to investigate the web, what could be better?
> the “e-patient”, that is an adversary role, challenging the doctor
> for web corroboration. Is that really what the doctor will encourage and guide?
Well, Art, in the Society for Participatory Medicine we don’t consider it an adversary role – we consider it a partnership. That’s why the symbol we use is a handshake.
I can’t speak for other doctor members because I haven’t worked with them or seen them work, clinically, but I know Dr. Danny Sands proposes ideas with “What do you think?” and I do the same.
A year ago I heard a talk by Richard Rockefeller MD of Martin’s Point Healthcare in Maine. He was listed by “Doc Tom” Ferguson as one of his advisors on the white paper that’s the cornerstone of our work here. During Q&A another doc asked him, “What do you DO if a patient brings in something really wrong from the internet?” Rockefeller paused a moment and said, “If you have a collegial relationship, you can talk about it.”
As for doctors abhoring the web, some still do, but that tide is turning. Dr. Sands is so “turned” that he actively solicits from patients what websites they visit and if they’ve found any useful.
The problem, of course, is that this is no help for patients who have an anti-web doc and can’t readily change. My view is that such a relationship falls seriously short of its potential. But, that’s the work we’re doing here in the society.
What if the Q&A doc had asked—(most unlikely)—“What if the pt brings me web material which is credible and shows me I was wrong and dangerous and in violation of the data?”
Dave, you can’t even imagine that happening, it is so outside
the confines of the medical brotherhood. and it should be
reported in the Accountable Care system, which has no
procedure to guarantee such accountability; in other words, it is a toothless, empty, self-glorifying show. I am
indeed the diversity . And PCORI exists because the docs
ARE NOT GOOD ENOUGH TO BE TRUSTED!
Timing problem in the doc/pt thing. Doc proposes now, pt
has to go away and research the web, resolution has to wait
for future contact which may or may not take place. I don’t
do follow-ups with my docs: either I got what I wanted or I
lost whatever respect and trust I had in that doc. No doc
has ever started the contact with ‘let’s start thinking about it”, and how does that work with fee-for-service? And ACO? And 15minute visit, where doc spends the time looking at my chart? My conclusion: if it’s not life or death,
my “grandmother’ or druggist can’t do worse.