The initial definitions

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fred trotter

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May 31, 2011, 5:32:41 PM5/31/11
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Here are the initial definitions that we came up with in our face to face.
Please feel free to comment on them, and after we arrive at some
consensus, I will begin the process of submitting them to SPM and QS
communities..

What does a quantt friendly doctor mean?
Take Quant data seriously, but with a critical scientific perspective
Enable health quantting by providing access to greater data sources
(i.e. scripts for medical devices etc.. )
Will to sell time on a Direct model (low cost directly paid for care).
(sometimes they are contractually forbidden)
Willing to give reliable health data resources, and healthcare data
context in a fast and effective way.


What does a doctor friendly quantt mean?
Respectful of time, recognize that often, no one is paying for this.
Recognize that you might need to pay directly to take more of a
doctors time. Recognize that quantting with doctors is a long term
project, this is not a single visit issue. Bring your data and your
conclusions, do not expect the doctor to do initial data analysis,
without the understanding that if you want them to do that work might
cost extra.
Quantting can be empowering and healthy, but it can also be
obsessional and unhealthy. Doctors have an obligation not to enable
obsession or self destruction. Being “quantt friendly” is not a blank
check from your doctor for behaviors they consider unhealthy. Doctors
may be the bearers of bad new about the clinical and scientific
validity of your quantting efforts.
Try to ensure that your data is well-formatted and as objective as possible.

Other good notes that do not fit into these questions:

3 cases of patients bringing data to docs.
hard core quantter - has objectivity need prescriptive power
participate in self-obsessing
quantting as empowerment

How to qualify a doctor who is quantt friendly?

Soft ->
Say "I like to track my own data are you willing to help me with that?"

Hard ->
Say "I like to experiments on myself are you willing to help me?"

Too hard ->
Say "Can you help me sew this back on?"

How do you push a quantt neutral doctor to be a quantt friendly
doctor? Open Question

--
Fred Trotter
http://www.fredtrotter.com

Eri Gentry

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May 31, 2011, 5:55:28 PM5/31/11
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Fred,

Thanks for that - as well as for setting up the group. I missed the original session, but was sad I had after seeing the enthusiastic tweets about it. :)

Couple questions for you -

1. What happened during the session that prompted the creation of a mailing list?
2. (Related) What are the aims of this list?

Trying to both get myself up to speed and re-frame my thinking that doctors can be helpful (present MD company excluded!)

Thank you!

@erigentry 

Dr. Paul

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May 31, 2011, 6:58:30 PM5/31/11
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The breakout group on Sunday at #qs2011 spawned from Fred's NHIN Direct group, when it became apparent that the "quantified doctor" or "quant-friendly doctor" was a topic with a life of it's own. 

There were so many ideas and questions flowing that some kind of ongoing discussion seemed warranted. Hence the google group/list.

As I recall, the aims were (non exhaustive list, with some of my own agenda added):
- explore how quant-ers can productively interface with doctors
- how doctors can productively interface with quant-ers
- define the spectrum and subtypes of quant-ers and doctors (in this context)
- help quant-patients to navigate the medical system
- build use-cases to flesh out how quantified self approaches might be able to improve our medical care system, and how the the medical system might be able to improve QS approaches
- form a community of quant-patients and quant-doctors to develop mutual trust and understanding. Realizing that many of the quant-doctors are also quant-patients... ;-)

Just a first cut aimed at stimulating discussion.
Best,
Paul Abramson MD


Sent from my iPad

On May 31, 2011, at 2:55 PM, Eri Gentry <sap.v...@gmail.com> wrote:

Fred,

Thanks for that - as well as for setting up the group. I missed the original session, but was sad I had after seeing the enthusiastic tweets about it. :)

Couple questions for you -

1. What happened during the session that prompted the creation of a mailing list?
2. (Related) What are the aims of this list, 

Trying to both get myself up to speed and re-frame my thinking that doctors can be helpful (present MD company excluded!)

Thank you!

@erigentry 

On Tue, May 31, 2011 at 2:32 PM, fred trotter <fred.t...@gmail.com>
Here are the initial definitions that we came up with in our face to face

w.e. b.

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Jun 3, 2011, 8:44:55 AM6/3/11
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hi everyone -

i have detailed notes on the "quant-friendly doctors" breakout session, which i'd be happy to send out via this list and to post on the QS wiki as soon as i get a chance to clean them up (have been a bit swallowed by end-of-quarter grad school insanity; i'm sending this at 5:30 b/c i'm up late, not up early ;P).

my question of the moment is: what are our next steps? fred is gathering feedback on the summary points, then sending them on...but where do we go from there? is there anything we want to do in the meantime?

in terms of feedback, the one thing i see missing in the summary falls under 'quant-friendly doctor' characteristics, and that's the issue of the quality/type of relationship between the quanter and the doctor (eg more a collaborative partnership in which individuals with different but interfacing areas of expertise work together roughly as equals, and less the oldschool 'doctor knows best' / unquestioning compliance model). we couldn't come up with a good way to capture this in the session, but i think it's an important issue that shouldn't be missing from the final product. what do people think about how this element can best be communicated?

lastly, i may have the opportunity this fall to develop a supported research project that would focus on ways in which quanters (and other citizen scientists) and medical professionals can/are work(ing) together to develop new paradigms for 'doctor/patient' and 'researcher/subject' relationships, as well as to challenge the existing model of institutional healthcare. if anyone would be interested in working on this with me, please let me know! the program to which i'm applying for funds is particularly interested in cross-disciplinary collaboration, so people from all backgrounds - quanter, doctor, other - are invited.

cheers,

-w.

whitney erin boesel
Graduate Student, Sociology Department
University of California, Santa Cruz
phenat...@gmail.com
Twitter: @phenatypical

Keith

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Jun 3, 2011, 9:41:49 AM6/3/11
to quantified doctors
Following up on Whitney's question about next steps - here's what I've
done so far, and I would greatly appreciate community feedback on any
and all.

1. Started a tumblog as a way to track and develop my own thoughts on
the subject. My first post, "A Quant Revolution in Health Care" is at
http://drskc.tumblr.com . Your comments, reactions, and suggestions
would be welcome.

2. Contacted Khaled Hassounnah, CTO of MedHelp, regarding possible
collaboration on integrating health tracking into our primary care
practices in Miami. We are scheduled to have an initial phone
conference about this on Monday. I will report back on progress.

3. Discussed with my VP of Operations about starting a new service in
our primary care practices to serve QS patients. She was enthusiastic,
so we are now doing some market research and identifying the internal
and external resources we will need.

With regard to #3, I wonder if I could get some initial feedback from
this group on the most-desired aspects of such a service. We intend to
offer, at a minimum:

- a respectful, collaborative approach
- integration of individual's self-generated data into the overall
assessment and recommendations
- an ongoing relationship, rather than a one-hit consultation
- a focus on wellbeing and optimal function, rather than just on
eliminating illness
- support for a self-customized, self-experimental appraoch

Given the above, what specific areas of function would you suggest we
target?
Exercise? Diet? Mood? Sleep? Stress? Other - what, specifically?
We want to make sure that we have the necessary expertise on board or
on tap before launching.

Anticipating that insurance will not pay for all (or maybe any) of the
services needed or valued, how do you suggest we bill for these
services?

Monthly subscription?
Hourly billing?
Other?

What would you consider a fair price for these services, when compared
to other consumer health services, such as health clubs, yoga lessons,
diet centers, etc.?

Any feedback you could give would be much appreciated. If we can
develop a practical, feasible plan for this service, we will launch
it.

Thanks much,

Keith
> phenatypi...@gmail.com
> Twitter: @phenatypical
>
>
>
> On Tue, May 31, 2011 at 3:58 PM, Dr. Paul <drpaul...@gmail.com> wrote:
> > The breakout group on Sunday at #qs2011 spawned from Fred's NHIN Direct
> > group, when it became apparent that the "quantified doctor" or
> > "quant-friendly doctor" was a topic with a life of it's own.
>
> > There were so many ideas and questions flowing that some kind of ongoing
> > discussion seemed warranted. Hence the google group/list.
>
> > As I recall, the aims were (non exhaustive list, with some of my own agenda
> > added):
> > - explore how quant-ers can productively interface with doctors
> > - how doctors can productively interface with quant-ers
> > - define the spectrum and subtypes of quant-ers and doctors (in this
> > context)
> > - help quant-patients to navigate the medical system
> > - build use-cases to flesh out how quantified self approaches might be able
> > to improve our medical care system, and how the the medical system might be
> > able to improve QS approaches
> > - form a community of quant-patients and quant-doctors to develop mutual
> > trust and understanding. Realizing that many of the quant-doctors are also
> > quant-patients... ;-)
>
> > Just a first cut aimed at stimulating discussion.
> > Best,
> > Paul Abramson MD
>
> > Sent from my iPad
>
> > On May 31, 2011, at 2:55 PM, Eri Gentry <sap.ved....@gmail.com> wrote:
>
> > Fred,
>
> > Thanks for that - as well as for setting up the group. I missed the
> > original session, but was sad I had after seeing the enthusiastic tweets
> > about it. :)
>
> > Couple questions for you -
>
> > 1. What happened during the session that prompted the creation of a mailing
> > list?
> > 2. (Related) What are the aims of this list,
>
> > Trying to both get myself up to speed and re-frame my thinking that doctors
> > can be helpful (present MD company excluded!)
>
> > Thank you!
>
> > *@erigentry <http://twitter.com/#%21/erigentry> *
>
> > On Tue, May 31, 2011 at 2:32 PM, fred trotter < <fred.trot...@gmail.com>
> > fred.trot...@gmail.com>
> >>  <http://www.fredtrotter.com>http://www.fredtrotter.com- Hide quoted text -
>
> - Show quoted text -

fred trotter

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Jun 6, 2011, 3:09:31 AM6/6/11
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On Fri, Jun 3, 2011 at 7:44 AM, w.e. b. <phenat...@gmail.com> wrote:
](eg more a collaborative partnership in which individuals with different but interfacing areas of expertise work together roughly as equals, and less the oldschool 'doctor knows best' / unquestioning compliance model).


Whitney,
                This is the mantra of the epatient movement. This would probably be a good time for everyone to go explore that community.

http://e-patients.net/

I think reading the whitepaper would be esp good...

http://e-patients.net/e-Patients_White_Paper.pdf

As we focus on next steps, I do -not- want to focus on empowering patients generally, because that is such a really huge scope and more importantly, there is a huge community focused on this with the e-patients. I already frequently work with them on projects and I hope this will be another one of them.

What I want to keep this group focused on, assuming this makes sense to everyone else, is the Quant-Doctor bridge. The first and most important task here is to get a resource up, that allows quantts to find and potentially suggest quant-friendly doctors. As well as perhaps create a web-page or something like that details and extends the basic lists that we came up with at the conference....

Having said that, this is just -my- focus. I think there is more to be done and I do not want to stunt any growth here. I am just talking strongly about what I see as worth working on, and what I am willing to contribute to.

Also, my understanding is that the QS people are pretty zonked and need a little break after the conference... I know I do.... so this will probably be something I will be returning to in earnest in a few weeks...

-FT


 

Dr. Paul

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Jun 6, 2011, 4:21:48 AM6/6/11
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Good thoughts all. I've written a few preliminary things down and look forward to checking out others' notes.. 
And yes, phenatypical, I'm very interested in cross-disciplinary projects. Do get in touch if this looks like a reality.
May hibernate for a week or two but will keep thinking on this. And I agree with Fred that the quant-doctor interface is the correct focus for now. Empowering patients in general is too big a topic and only partially related.

Paul Abramson MD
Private Practice in San Francisco and UCSF Clinical Faculty.


Sent from my iPad

On Jun 6, 2011, at 12:09 AM, fred trotter <fred.t...@gmail.com> wrote:

On Fri, Jun 3, 2011 at 7:44 AM, w.e. b. <phenat...@gmail.com> wrote:
](eg more a collaborative partnership in which individuals with different but interfacing areas of expertise work together roughly as equals, and less the oldschool 'doctor knows best' / unquestioning compliance model).


Whitney,
                This is the mantra of the epatient movement. This would probably be a good timfor everyone to go explore that community.

http://e-patients.net/

I think reading the whitepaper would be esp good...

http://e-patients.net/e-Patients_White_Paper.pdf

As we focus on next steps, I do -not- want to focus on empowering patients generally, because that is such a really huge scope and more importantly, there is a huge community focused on this with the e-patients. I already frequently work with them on projects and I hope this will be another one of them.

What I want to keep this group focused on, assuming this makes sense to everyone else, is the Quant-Doctor bridge. The first and most important task here is to get a resource up, that allows quantts to find and potentially suggest quant-friendly doctors. As well as perhaps create a web-page or something like that details and extends the basic lists that we came up with at the conference....

Having said that, this is just -my- focus. I think there is more to be done and I do not want to stunt any growth here. I am just talking strongly about what I see as worth working on, and what I am willing to contribute to.

Also, my understanding is that the QS people are pretty zonked and need a little break after the conference... I know I do.... so this will probably be something I will be returning to in earnest in a few weeks...

-FT


 

w.e. b.

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Jun 9, 2011, 9:50:26 PM6/9/11
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hi everyone -

after taking some time to familiarize myself with the e-patient movement following the QS conference (i'd not heard of it before), i have to say that while i can see how some "quants" might *also* be e-patients, i think they're two very different things. what i was trying to get at with language about the dr/quant relationship wasn't about empowerment (i agree that "patient empowerment" is outside our scope: most patients are not quants, and i think most quants would argue they are already 'empowered'!), but about understanding this distinction - about recognizing that the dr/quant relationship is not necessarily a dr/patient relationship.

NUTSHELL: a truly quant-friendly doctor should be able to have respectful working relationships both with a) non-patient quants who need help accessing tests and equipment, *and* b) patients who also happen to be quants.

from what i understand (i'm about half-way through the white paper), the e-patient movement sees patients' research (typically internet-based and about conditions with which they've been diagnosed) as a supplement - if a potentially important one - to traditional models of diagnosis and treatment in a doctor/patient relationship. a quant, on the other hand, may view a doctor as supplementary to his or her own self-directed projects (which might be about experimentation or gaining self-knowledge rather than about diagnosing or treating a condition). though a quant may sometimes *also* be a patient, and would then need a doctor who was comfortable with and able to make use of the additional data the quant brings to his/her treatment, i would argue that the quant who simply needs a physician's signature to access desired lab tests or medical equipment is *not* a patient. a truly quant-friendly doctor would therefore be able to recognize this distinction, and would be able to act as "consulting expert who can prescribe a glucometer" (for example) rather than "treating physician" when required. i recognize that this can be asking a lot from a physician, especially one who's more accustomed to being The Authority or the one "running the show" - but i think it's important to capture this idea that a quant-friendly doctor is friendly to quants whether or not the quants are patients.

(i'm thinking here of something paul said in the breakout session, about sitting down with a quant, reviewing that person's request, and - upon determining for himself that the quant in question is sane, not self-destructive, and can be trusted not to do anything rash or stupid - writing the prescription for the lab tests or equipment that the quant wants to access. that's a different service, and a different relationship, than signing on to oversee the quant's project or attempting to bring the quant into a conventional medical treatment plan.)


what do people think about this - that there are actually *two* rough types of quant-doctor interface?


-w.

fred trotter

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Jun 10, 2011, 1:13:38 PM6/10/11
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The point of "empowerment" is to actually be able to do something.

A patient coming to doctor with a proactive agenda of any kind marks
an e-patient.

The alternative is paternalism in medicine, where all "direction"
regarding health comes from the doctor.

So I do not think it is realistically possible to be a quant patient
without being an e-patient too.

I am not arguing that all e-patients are good patients. A person can
be engaged while still being obsessive and/or delusional...

-FT

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