The contents of this blog will be transferred to a different server over the next few days. Hopefully readers won’t witness any disruption in access but there always seem to be a hiccup or two in these migrations. Careful readers may notice a slight change in appearance once the blog arrives on its new server. This is natural evolution at work. Since The Quantified Self will no longer run on www.kk.org, the former KK* navigation design will be missing. Over the next few months new discussion and chat features will probably be be added as we try to keep improving the site. Changes in the design will keep up. To that end if you have suggestions about how to make this blog better, or would like to participate in making it better write Alexandra or Gary.
We have posted a page of self-tracking resources and links. You can find it right here. It’s pretty basic. If you know of a resource that is missing, let the list-makers know.
This list would be 100 times better if there were a line or two annotation for each link, and maybe even a catagorized version. We are looking for a volunteer, or two, to add some notation. Would anyone like to tackle this list?
We are also looking for a volunteer to take the pile of videos we have uploaded of the previous Quantified Self Meetups and embed them into this blog. Again with a sentence of introduction.
Let me or Gary know if you are interested.
David Pogue’s column in the New York Times today reviews two fitness self-tracking tools, the Fitbit and the DirectLIfe. Both are small monitors you carry that measure your physical activity — sort of like a digital pedometer. As he explains:
The coolest Fitbit bit is the way it sends your collected activity data to its little U.S.B. charging stand. If you leave that stand connected to your computer, with the Fitbit software running, then just passing within 15 feet is enough to trigger a wireless transfer to the Web. Then, at Fitbit.com you can view graphs of your exertions, right down to the minute. (The spikes represented by my weekly tennis games were especially impressive.)
I would summarize his evaluation after his trial this way: FitBit is beautifully designed but your ability to interact and interpret the data is limited. The DirectLife is overdesigned but has better and more useful data interface. He concludes:
Both of these gadgets do the primary job: making you aware of how much you move. You really want your Fitbit flower to grow; you really want to light up more DirectLife dots (and please your coach). As a result, you really do wind up finding your own little ways to eke out a little more exercise. What’s so likeable about these new gizmos is that they’re so tiny and simple and cheap, it’s almost no effort to use them.
For another take on the recent the Quantified Self meeting at the Wired offices, Wired Science ran their own report on the several sleep hacking experiments presented. They mentioned Wakemate, Zeo, and Matt Bell’s infrared sleep cam.
“I’m an information pack rat,” he confesses. Recording our interview is just the tip of his peculiar obsession with documenting every moment of his life. “I have a keystroke logger that has collected my every keystroke for the last 22 years,” he says. “Every day I get an email that tells me how many keystrokes I typed the previous day into each application. I find it slightly interesting.” He shrugs off my suggestion that it’s a way of securing his immortality; he believes that soon everyone will be doing it.
I agree. Soon many people will be logging all their messages, either text, phone, email, or gestures and using them to recall and share with others. It won’t seem strange at all. Strange will be those who opt out of life-logging — at great expense and effort.
We will have our 9th Quantified Self Bay Area Meet Up this week on Wednesday, October 14, 2009. It will be held in Stanford University at the Wallenberg Learning Center (below).
As in the past, this is a user-generated evening of presentations by folks who are self-tracking in one form or another. Each presenter gets about 12 minutes to tell everyone what they are learning and what tools they are inventing.
I was unable to attend the last show and tell because it came during the final weeks of my overdue book deadline (which is now past me!). But Gary Wolf and I will be co-hosting this one, and filming the talks. If you are around the Bay Area go over to the QS Meetup page to get directions and let us know you are coming. I heard the last meeting was swamped, so we’d like to be more prepared this time. (We WILL post the talks from last meeting.)
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:
- 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.
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: firstname.lastname@example.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
The New Yorker has a very good article on self-experimenters — mostly college students — using cognitive enhancers, beyond the traditional caffine and NoDoz. It’s unclear how many of these folks are quantifying their experiments, but they should be. A few excerpts:
The effects of piracetam on healthy volunteers have been studied even less than those of Adderall or modafinil. Most peer-reviewed studies focus on its effects on dementia, or on people who have suffered a seizure or a concussion. Many of the studies that look at other neurological effects were performed on rats and mice. Piracetam’s mechanisms of action are not understood, though it may increase levels of the neurotransmitter acetylcholine. In 2008, a committee of the British Academy of Medical Sciences noted that many of the clinical trials of piracetam for dementia were methodologically flawed. Another published review of the available studies of the drug concluded that the evidence “does not support the use of piracetam in the treatment of people with dementia or cognitive impairment,” but suggested that further investigation might be warranted. I asked Seltzer if he thought he should wait for scientific ratification of piracetam. He laughed. “I don’t want to,” he said. “Because it’s working.”
Alex’s sense of who uses stimulants for so-called “nonmedical” purposes is borne out by two dozen or so scientific studies. In 2005, a team led by Sean Esteban McCabe, a professor at the University of Michigan’s Substance Abuse Research Center, reported that in the previous year 4.1 per cent of American undergraduates had taken prescription stimulants for off-label use; at one school, the figure was twenty-five per cent. Other researchers have found even higher rates: a 2002 study at a small college found that more than thirty-five per cent of the students had used prescription stimulants nonmedically in the previous year.
This winter, I spoke again with Alex, the Harvard graduate, and found that, after a break of several months, he had gone back to taking Adderall—a small dose every day. He felt that he was learning to use the drug in a more “disciplined” manner. Now, he said, it was less about staying up late to finish work he should have done earlier, and more “about staying focussed on work, which makes me want to work longer hours.” What employer would object to that?
The cheapest commercial genome testing right now is from 23andMe for $400. Prices in this area will continue to drop, while the number of genes sequenced rise. However nothing beats free. You can now get your genome sequenced (partially) for free by participating in a large-scale research program to try to correlate genes with disease. The Coriell Personalized Medicine Collaborative (CPMC) is being funded by charitable foundations, and they have money at present to sequence 10,000 volunteers. To get your genes sequenced for free there are several caveats.
1) You need to be over 18
2) You need to attend an educational session. At the moment these are only offered in Camden, New Jersey (near Philadelphia). They claim to be working on a mail-in version later.
3) You won’t get your gene code back. Instead you will only receive data that is “medically actionable.” In other words you will only get reports about genes that their board of doctors feel you can do something about.
The key phrase here is “board of doctors.” Unlike commercial services which return your full test results and let you do what you want with this data, this survey is run by doctors who feel ethically obligated to offer responsible medical counsel, and so they will not tell you about genes that have no medical value, or about which the science is not certain in their opinion.
For some people this is the doctor priesthood exerting their control over your health options (they would like companies like 23andMe shut down unless they let doctors take control). For others, this is a good deal. Free testing, plus free doctor advice about what is worth paying attention to and what is just fluff.
My long-term prediction has been that pharmaceutical companies will eventually pay for your genome sequencing in full since they can target drugs to specific genetic cohorts and avoid those patients with genes that may produce negative side effects. But again you may not get your full sequence back. But as in the rest of life, there is no such thing as a free lunch.
To clarify what kind of results you get back, here are some excerpts from the CPMC FAQ:
This study will only report back to participants those genetic variants that are potentially “medically actionable.” Potentially medically actionable genetic variants are those for which 1) there is a scientifically valid association between the variant and a specific health condition, 2) there are actions or interventions that can be taken to reduce the risk of the health condition, and 3) the risk of adverse events from these possible interventions is likely small in relation to the risk associated with the genetic variant if no medical action is taken.
You WILL NOT receive results for all genetic variants. Genetic variants associated with medical conditions for which there is no treatment or intervention to reduce the risk of disease WILL NOT be reported back to participants. For example, variants elevating risk for incurable diseases such as Alzheimer’s disease will not be reported. If a new therapy or lifestyle intervention is reported, the ICOB may update a condition to be “potentially medically actionable.”
The technology employed by the CPMC™ is not designed to detect single-gene mutations that cause rare Mendelian disorders such as sickle cell disease, cystic fibrosis and Tay-Sachs; therefore, these are very unlikely to be detected and reported to you.