You Own Your Health Data

Kevin Kelly

You "own" your own health data. That is clear if you generate it yourself, as self-trackers do. But even when others generate health data for you, you should have full access and "ownership" of it. They are only "borrowing" the data.

But not every health care provider makes it easy to get cheap access to the quantified data about your body. Therefore an explicit declaration that everyone should be legally ensured of that access is a good thing. It has no legal binding, but if enough people endorse it, and pledge to honor it, and make a point of patronizing those doctors and health providers that also honor it, then maybe it can become something to enforce.

Here is what such a declaration of health data rights might look like, as developed by a volunteer group of doctors, providers, professors, journalists, and bloggers. I was happy to see an early version and sign the endorsement. Consider this declaration a beta version. There are just four simple, hard to deny claims:

We all

• Have the right to our own health data
• Have the right to know the source of each health data element
• Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form
• Have the right to share our health data with others as we see fit

The growing list of endorsements for these essential claims can be found at Health Data Rights. Add your signature if you think these rights to be fundamental for a 21 century health care system. You can also add your endorsement by sending a tweet to #myhealthdata.

Next step: If you are a health care provider who generates or captures health data of patients, and you honor these rights, then place a badge or announcement declaring you do. It will help shame others into getting up to speed.

This is is not quite the same thing as the handwritten copy of the Declaration of the Rights of Man and of the Citizen (1789)  but it is agreement with the older document's aim to establish rights that will seem intuitive to later generations.

Hulda Emilsdottir and Josh Klein on Tracking Possessions

Gary Wolf

In this inspiring talk from the recent New York City QS Show&Tell Hulda Emilsdottir and Josh Klein talk about the system Hulda developed to analyze their relationship to their possessions, and then about another system Hulda made for buying clothes based on seasonal usefulness, care-requirements, and compatibility with her other clothes.



[For info about the next New York QS Show&Tell, add yourself to the MeetUp list here.)

David Reeves, Limeade Founder, on QS as Employee Wellness

Gary Wolf

Help Create the QS Network on Ning

Gary Wolf

Thanks to Chris Finlay, the Quantified Self now has a nascent social network on Ning. You can find us here:

The Quantified Self on Ning

Chris and I were talking about the ideal design and features for this social network, and as I was staring at the blank google doc we created for our outline it occurred to me that perhaps the best way to discover what we could use this new tool for was to invite current QS readers to join and experiment. So take a look, and give us some feedback.

We would like to use a QS social network to encourage collaboration and project sharing. Our hope is to bring the spirit of the QS Show&Tell meetings to the web.

I think most of us will agree that we don't need another stream of email and direct messages in our lives, complete with new login names and notifications that require hitting a web page to follow up on. We'd like to design this site to support collaboration, without making it into an annoyance. Can you help? Go to Ning, create an account, and give it a try. Your feedback will help.

Journal of Participatory Medicine

Kevin Kelly

I've long been interested in medical self-care. The idea of patients taking responsibility of their own health and healing seems to me to be essential in the long run. Quantified Self was started in part to collect a certain kind of tool that (among other reasons) might give you data which could be used to maintain or improve your health. Data measurement is only one way to improve your health, and it should certainly not be the only way. The main thing is that health is your job, and doctors and hospitals are your assistants and advisors, but to live this way requires a lot of education, skills, and support. 

I'm not the only person to head in this direction and for the past three decades a large number of dedicated doctors, public health agents, self-care journalists, and patient activists have been working on all kinds of ways to increase the role of informed patients. The newest channel in this effort is the launch of a peer-reviewed science journal dedicated to research in the field of "participatory medicine" -- as in patient participant. (Sometimes labeled Health 2.0) There is a great overlap with self-tracking and  the quantified self (although by no means is all self-tracking health related), so I think this new journal will appeal to self-trackers and self-trackers to the patient-participant field.

This journal, called sensibly enough, the Journal of Participatory Medicine, will use an open source model (no fee to get the articles)  which is both very much in the spirit of the paradigm, but also very future-proof (free is where all journals are headed).  I serve on the Advisory Board of this publication (other advisors are Adam Bosworth, Esther Dyson, David Kibbe, MD, Howard Rheingold, Eric von Hippel, PhD, Peter Yellowlees, MD).

The short FAQ below is intended to help solicit papers for the first issue of this journal. If you are a self-tracker with interesting results or have some research about self-tracking that you think would benefit others you might consider publishing it in this journal. In addition to straight up scholarly articles, they also publish news bits, book reviews, "narratives", and the usual journal mix of related material.

Send email to Charles W. Smith, MD Jessie Gruman, PhD, to: editors@jopm.org (there is no website at present). Mention Quantified Self.

1. What is the purpose of the Journal of Participatory Medicine (JPM)?
The Journal will bring together the best available evidence and examples of participatory medicine to:

*  Make a robust case for its value to people - sick or well -, advocates, and health professionals
*  Serve as a meeting place and rallying point for those at the leading edge of participatory medicine
*  Engage, inform and include those who have been involved in, or practicing, participatory medicine. We aim to advance both the science and practice.

The mission of the Journal is to transform the culture of medicine to be more participatory. And we believe that doing so, as the saying goes, will take a village - perhaps even a large metropolitan area! JPM constitutes a major investment of time and talent in community development.

2. What processes will we use to publish JPM?
JPM will be a peer reviewed journal published exclusively in an online journal format, using Open Journal Systems, an open source journal management and publishing system developed by the Public Knowledge Project -- a nonprofit partnership between The University of British Columbia University, Simon Fraser University and Stanford University. We don't anticipate charging a subscription fee for access to the Journal and it will be freely available to the public.

3. What will constitute the content of JPM?
Our plan is to begin publication of the Journal this fall with six types of articles. We anticipate additional content categories once we have established review criteria and procedures are running smoothly. The first issue will include one or more items from each of these six content types:

1. Research Articles. Papers describing randomized trials and quasi-experimental design studies that test hypotheses about the prevalence and impact of participatory medicine and interventions to facilitate it
2. Editorials. Commentary on the role of participatory medicine in the larger health landscape; overarching observations about secular trends, politics, policy and practice relevant to participatory medicine
3. Narratives. Videos, podcasts, and essays that showcase patients and providers and demonstrate examples of participatory medicine in action
4. Case Reports. Structured accounts illustrating individuals' (patients and professionals) experiences with participatory medicine
5. Reviews. Critical summaries of scientific literature from adjacent fields and disciplines, and of products, web sites, and events
6. Media & Journal Watch. Brief commentaries on (and links to) recently published journal articles, blog posts, and news reports


Editorial Board Members
Mohammad Al-Ubaydli, MD, Patients Know Best (PHRs)
Jack Barrette, WEGO Health
Mike Battaglia, Health care consultant; formerly Intuit and Humana
Jeffrey Bland, PhD, Metagenics and The Institute for Functional Medicine
Kate Christensen, MD, Kaiser Permanente
Susan Edgman-Levitan, PA, Stoeckle Center for Primary Care Innovation, MGH
Ted Eytan, MD, MPH, Permanente Federation
Patty Feist, Pediatric Oncology Resource Center
Rushika Fernandoupulle, MD, MPP, Renaissance Health
Peter Frishauf, Crossix Solutions, Medpage Today, Omnimedix Institute
Gilles Frydman, ACOR
Alan Greene, MD, Dr.Greene.com, Standford Univ.
Sarah Greene, Keas Inc.
Dan Hoch, MD, MGH & Harvard Medical School; Braintalk.org
Alejandro Jadad, MD, Centre for Global eHealth Innovation, Univ. Toronto
Greg Juhn, A.D.A.M. Inc.
Gary Kreps, PhD, Health Communications, George Mason University
Joseph Kvedar, MD, Center for Connected Health, Partners HealthCare, Harvard Medical School
David Lansky, PhD, Pacific Business Group on Health
Jon Lebkowksy, Social Web Stragegies; Weblogksy blog
Kate Lorig, RN, DRPH, Stanford Univ. School of Medicine and Stanford Patient Education Research Center
Amy Marcus, Wall Street Journal
Faith McLellan, PhD, World Health Organization
Carol Peckham, Medscape
Carlos Rizo, MD, Health Strategy Innovation Cell and eHealth in Motion
David Rosenthal, MD, Brigham & Womens Hospital (Resident)
Andrew Schorr, Patient Power radio program and webcasts
Josh Seidman, PhD, Information Therapy
Clay Shirky, Interactive Telecommunications, New York University
Amy Tenderich, DiabetesMine.com
Trisha Torrey, DiagKNOWsis, About.com, Allexperts.com
Roni Zeiger, MD, Google Health

Tweet Sheet - (Plus QS SHOW&TELL #6 - Tonight!)

Gary Wolf

Tonight's Bay Area QS Show&Tell will be fun and interesting. There are a number of people who have told me in advance that they have something to show, and as always you are welcome to present your self-tracking projects spontaneously as well. Our host is Orange Labs, the research and development group of France Telecom; courtesy of QS'er Steven Rose.

As usual there will be a social hour from 6 p.m. to 7 p.m., and then very short presentations until we run out of either presentations or time: we end at 9 p.m. Please come and enjoy yourself.

For regular info on the Bay Area Show&Tell meetings, you can sign up here:
The Bay Area Quantified Self Meetup Group.

New York readers can join this one:
The NY Quantified Self Meetup Group

And if you don't live in one of these cities, but would like to organize a QS Show&Tell anyway, contact us here or via MeetUp. We'll be glad to help.

In honor of the informal spirit of QS, here is a fun video demo by QS'er Garfield, who has been experimenting with what is possible using Google Docs. Garfield posted a link to some of his explorations in the comments to Joe Betts-Lacroix's demo of how to use Google Docs to make a mobile self-tracker. As you can see, Google Docs also offers interesting possibilities for display and sharing. Garfield's demo is about implimenting a personal Twitter clone using Google docs, but the method he's suggesting could be used to imbed many different kinds of personal tracking data into a stream for web display.

We're not shilling for Google here, but it turns out that Google Docs is pretty powerful for data collection and display. As for data analysis - well, that's a different story, and a topic for a different post...

NYC QS Show&Tell I - The Beauty of Self-Tracking

Steve Dean

Last night was the inaugural NYC version of the Bay Area QS Show&Tell held at Parsons The New School for Design, on the newly renovated ground floor in the "Bark" Orientation Room (it's literally covered in bark).

Presentations included lots of very original and self-expressive charts of stuff tracked.

Mimi Chun presented some beautiful artifacts in the form of diagrams and graphs with remarkable detail illustrating some of her self-tracking projects including the color of her food palette. "Square Meal" is shown above.

Matthias Hollwich forecasted the future of architecture in 100 years.

Devon Jones from the hacker collective NYC Resistor showed us a fascinating approach to hacking your Prius by using a laptop and the modular, open source system BUG from BugLabs.

Garfield shared with us a nifty online tool called Shifd that links up your mobile device and Google docs. (I ran home and signed up. Joe Betts-Lacroix should love this tool!)

Josh Klein and his wife Hulda told us about how they catalogued all their possessions as they were preparing to move to Iceland -- what they loved, liked, used, didn't use -- and then relied on that same catalogue when they returned to NY to furnish an empty apartment.

We closed the evening with Nicholas Felton and Ryan Case presenting some of the many self-tracking projects from Daytum including one by a dog named Charley.

Thanks to all who attended. A great beginning to the NYC QS Show&Tell! Thanks to Chris Finlay, our videographer Seth Ludman, Gary Wolf and Kevin Kelly for all their help. We'll get video clips up soon.

QS SHOW&TELL - Tonight in New York City

Gary Wolf

Please join New York QS readers at the first NYC QS Show&Tell tonight. There is a great lineup, a great location, and a high probability of an interesting, fun evening. For location and time details, follow the link above to the NYC Quantified Self Meetup page.

The Show&Tell format will be the same as the SF Bay Area meetings, which is the same as it was in first grade. There will be brief presentations followed by questions and discussion about our self-tracking projects, ideas, tools, and experiments. You can send a message from the MeetUp page if you'd like to present. You can also make a spur of the moment decision when you show up.

Many thanks to Steve Dean and Chris Finlay for organizing, and to Seth Ludman for agreeing to document the presentations on video.

Measuring Vital Signs From 40 Feet Away

Alexandra Carmichael

The US Department of Homeland Security has invented a Star Trek-like tricorder. Called the Standoff Patient Triage Tool (SPTT), it can measure pulse, body temperature, and respiration from up to 40 feet away. The obvious application is for emergency response teams, but why not have a tricorder stationed conveniently in your bedroom and office to monitor yourself, and ideally upload your physiological readings continuously to a data analytics website?

Here is an excerpt, and the whole news release is here:

The magic behind SPTT is a technology known as Laser Doppler Vibrometry, which has been used in aircraft and automotive components, acoustic speakers, radar technology, and landmine detection. When connected to a camera, the vibrometer can measure the velocity and displacement of vibrating objects. An algorithm then converts those data points into measurements emergency medical responders can use in their rapid assessment of a patient's critical medical conditions.

"The most fascinating thing in the world is a mirror..."

Gary Wolf

What do we see in the mirror of our data?

A couple of recent stories bring this question to mind. The first comes from Adam Bryant's profile in the New York Times of Jim Collins, author of business advice books that have sold millions of copies. Collins is tremendously successful; a few hours of his time is worth tens of thousands of dollars. One of his tools of success, according to the Times, is an amazing regime of self tracking.

JIM COLLINS calls his third-floor offices in the heart of this mountain-ringed city a "management lab." But little distinguishes his workspace from most others, save for a few things.

There is, for example, the small sign outside the door: "ChimpWorks." In case anybody doesn't get the point, a large Curious George doll sits in a leather chair, delivering the we-ask-a-lot-of-questions-here punch line. And in a corner of the white board at the end of his long conference room, Mr. Collins keeps this short list:

Creative 53%

Teaching 28%

Other 19%

That, he explains, is a running tally of how he's spending his time, and whether he's sticking to a big goal he set for himself years ago: to spend 50 percent of his workdays on creative pursuits like research and writing books, 30 percent on teaching-related activities, and 20 percent on all the other things he has to do.

These aren't ballpark guesstimates. Mr. Collins, who is 51, keeps a stopwatch with three separate timers in his pocket at all times, stopping and starting them as he switches activities. Then he regularly logs the times into a spreadsheet.

...

Oh, he sleeps with vigor, too. He figures that he needs to get 70 to 75 hours of sleep every 10 days, and once went to a sleep lab to learn more about his own patterns. Now -- surprise, surprise -- he logs his time spent on a pillow, naps included, and monitors a rolling average.

"If I start falling below that," he says, pointing to the short list on his whiteboard, "I can still teach and do 'other,' but I can't create."

Self-tracking appears here as a means of perfect self-control, and feats of extreme self-control are ways to cultivate and display power. James Dao discussed this recently in a short essay [requires registration], also in the New York Times, about the American general newly in charge of the war in Afghanistan. Lt. General Stanley A. McChristal has not yet revealed any of his self-tracking strategies, but his advance publicity includes information about his extremely disciplined lifestyle, his constant athletic training, and the fact that he eats only one meal a day "to avoid sluggishness."

Theatrical displays of personal precision are one version of self-tracking, but there are others. In the summer 2009 issue of strategy+business, the tech analyst Esther Dyson says that there are two big phenomena defining the internet right now. The first is social media, the second is the quantification of personal life. This is interesting because self-quantification is still outside the mainstream, but within the tech/entrepreneurial circles Dyson inhabits, it is clearly a powerful force.

Five years ago you'd read about diabetics who had to take their blood sugar readings or about these weirdos who put on pedometers when they walked. Now, that kind of measurement is everywhere. Web sites that seem at first glance like entertainment or service media are really devoted to managing and interpreting customers' data about themselves. Mint and Wesabe track your banking data and financial transactions. Skydeck organizes cell-phone records; you can see whom you call most frequently or whom you used to call but haven't called recently. You can compare your phone call patterns against other people's. 23andMe does the same thing for genomes. The most fascinating thing in the world is a mirror.

I think it is interesting to post this quote from Dyson next to the extract from the profile of Collins and the anecdote about General McChristal, because when most people look in the "mirror" of their data they will not see the perfect image of an asectic warrior or a polished and wealthy business consultant. They will see some order and some chaos. Some intriguing clues that may hold answers to questions they have, or some curious patterns they can make use of for self-expression or social connection. Most interesting will be the things that appear in the data that we did not anticipate. Maybe we will learn something new!

Spending a lot of time looking in the mirror is unhealthy for anybody past the age of adolescence.  "The most fascinating thing in the world is a mirror."  Isn't that statement kind of immature? And yet as far as personal data is concerned, I sympathize. The interesting thing about these unanalyzed numbers is the hint they give us that we don't completely know who we are. Suddenly realizing that you don't really know yourself; this is the pain of adolescence, and a great spur to growth.