i am a family doctor, i work in a private clinic in a small town where i manage my patients in the office and the hospital, i love technology. like most doctors these days working with my patients to change habits, set goals, increase awareness, etc is very difficult. i encourage my patients to read about QS, to explore patient’s like me, etc. the problem on my end is that the software i use does not support goal sharing. it barely even supports file sharing. i’ve searched the forums here about working with doctors, but have found very little actual technical information on how working with shared databases has helped the doctor patient unit effect goal and habit change. have any of you found better ways than others? when my patients come to me with data collected it is not always immediate how they organize their data. simple quantitative data is not bad, and some of my engineers patient’s will generate some stats on their data set, always appreciated. but some information is spacial, or involves text strings, or images. thoughts? experiences? hopes?
Hi Jim
Your question is a good one but a hard one, because I don’t think a general solution, or even general best practices, exist yet. However, there are some really excellent docs in the QS community who are exploring what works with their own patients. For instance, Paul Abramson of My Doctor Medical Group(http://quantdoctor.com/tag/quant-doctor/) has given some excellent talks at QS meetings about using data in his practice.
I don’t think we ended up posting any of them in the main section of the Quantified Self website, where we focus more on personal stories, but I found one from 2011 in the vimeo group, and give it a URL on quantifiedself.com so you could find it easily:
Paul Abramson on Quantified Self in Medical Practice
I hope this is a useful start. I will tweet Paul to let him know we’re having this discussion.
Hello Jim, Gary & Others,
Indeed the use of technology to improve & augment clinical medical care, personal behavior change and other important areas of medicine is high on my daily list of things to think about.
The current state of EMR technology is rather pitiful, IMHO. It’s hard enough to get products that:
- Are usable by doctors & patients
- Meet basic standards of compliance and legality
- Improve and don’t hinder physician workflow and business productivity
- Include/replace other tech solutions rather than just adding additional work - i.e. reduce frankenstein-technology-creep in medical practices
- Can handle highly complex medical patients as well as simple cases (i.e. scalability of UI/UX)
- Are based on modern technology that can integrate with other silos of information, old & new
And that’s just for the basic use case of medical care.
So adding layers of patient-generated self tracking data, goal setting, behavior change technology etc. is a bit of “cart before the horse” when it comes to EMR technology in its current form. Vendors need to get the basics down before getting into “next generation” use cases. And most vendors fail miserably at the basics, at the moment.
Now as far as implementing self tracking technology and behavior change into medical care, I think it’s absolutely interesting, important and necessary. I just think we need to do it using parallel processes to the EMR at the moment. Until we figure out how best to utilize this data to be most helpful to people in a medical practice, that is.
Here in San Francisco at My Doctor Medical Group, we are actively integrating self tracking into a wide variety of medical care scenarios. But it’s implemented using a team of people using pretty basic technology tools, and focused on the people interactions rather than the technology. Right now, technology just augments the “some combination of” doctor-coach-dietitian-psychotherapist team. It’s too early yet to try to automate or integrate the raw data into the EMR. Early results of our team-based approach (highly customized for each individual) are extremely encouraging, BTW.
So limiting this to just the doctor & patient is premature given the current state of technology. Too time intensive for the physician, and therefore too costly for the patient. And of course not reimbursable by third party payors because they don’t pay for that much physician time.
It’s possible that we can automate this in the future, but machine automation isn’t actually on my top 10 list of priorities these days… (this coming from me, with a masters in electrical engineering and significant time spent working as a coder in past lives).
Hope this spurs more discussion and look forward to hearing from others too!
Sincerely,
Paul Abramson MD
San Francisco
Twitter: @quantdoctor
Medical Practice: http://mydoctorsf.com
Blog: http://quantdoctor.com
i finished residency 4 years ago, and after writing audio video software for live shows i was really exited to get dirty with medical record systems. to my naive shock and horror non of the vendors had any interest in evolving their systems. i have subsequently learned why, and have met some of the most interesting people in medical data in america and europe. so i’ve started from scratch building a system based of functionality not based on the digitization of an historical data organizing principle that has not evolved much since 1500s.
what we need: multiple regional prototyping clinics where hardware and software can find better ways. i’ve formed a strong network in this part of the country, multiple state agencies, universities, clinicians, and scientist, and artists. to leave this to the industry is not appropriate for all the obvious reasons. we need to organize similar process in east/west/south and then learn from each other.
the technology is not complicated if we bypass legacy vendors, and work with our patients to ensure that the data we capture is valuable for contemporary clinical use and for future clinical scientists. with a 30+ year career ahead of me there’s no way in hell that i’m going to use the rubbish currently available.
QS has the ideal patient mix to push novel clinical systems hard enough to ensure robustness. as early second generation systems grow they should do so with the guidance of the advanced users that have gravitated to QS.
what’s the environment like out west for this kind of a thing? it will need to be in private practices that are free of hospital bureaucracy and data systems.
Hi Jim,
Your description is complex and involves many implicit (and some explicit) assumptions. I think it an excellent thing to explore inside the QS community, which includes many medical folks and also developers and advanced users, but you should do this with your eyes open: there are many, many different ideas and prototype systems out there. Could you sum up what you are doing in 3 or 4 sentences, this will make it easier to get comments. Are you making a data archiving system? A sharing protocol? A prototyping network? All of the above?
Gary
Gary: Are you making a data archiving system? A sharing protocol? A prototyping network? All of the above?
All of the above, but starting with a data sharing, archiving system that allows greater exchange between patient and the healthcare team. as we build this core system we are forming a prototyping network and preparing a physical and virtual space for future development.
if you are aware of similar initiatives then please let me know.
Paul: I agree with you, the current vendors are too busy capturing users with the meaningful use money. we have been building a system from the ground up to bypass these issues, leaving this up to vendors who have failed so miserably is not appropriate for clinical software.
we have been building sharing modules for coordinating problem/goal management with patients, visiting nurses, counsellors etc. these modules are serving for the core structure for our system. adding the full breadth of potential patient generated quantified data at this point is premature, but as we define our system we want to make sure that we don’t build obstacles. we are working with multiple independent and university based artists to attempt to comprehend not only simple quantitative data, but also more abstracted digital data that approaches pure art.
the bottom line is that bypassing the vendors needs to happen, and ideally those doing so should form some soft of cooperative network.
Jim,
I’d like to talk to you about your project.
I’m a QS organizer in Portland OR now, but in my previous life I was an engineer, then a doctor, then a software entrepreneur in the EMR/EHR space. It’s interesting to look back and realize that my first self-developed EMR (1982, on the Apple II+ !) was mainly built for patient-physician communication, not for record-keeping. Eventually I founded a company, MedicaLogic, that developed EMRs. That product is now the GE Centricity ambulatory EHR. I haven’t been involved with that for over a decade now.
I completely agree that current EHR development is being badly distorted by meaningful-use monetary incentives, rather than being driven by creative innovations. Having retired completely from that field, I love the freedom to experiment that the QS movement encourages. I believe it may well produce the deeply personalized approaches that can transform health.
Mark
markleavitt.com
mark@markleavitt.com
@markleavitt