Dear White House: The Personal Data Challenge

Earlier this summer Alexandra Carmichael, who is the founder of CureTogether as well as our director here at the Quantified Self, was in Washington for a meeting in President Obama’s Office of Science and Technology Policy (OSTP). When Alex came back she posted a report about her meeting here on the blog, and invited us to answer some questions from one of the President’s policy advisers.
 
A few weeks ago Alex convened a group of people especially interested in this topic for an hour long discussion via Skype. It was a fast-moving, wide-ranging conversation, with a lot of interesting cross talk. This post is my particular take on the conversation. Take it as the draft that it is; I’m interested in your comments.


First, some background from Alex:

A dedicated team in
President Obama’s office is coordinating the Community
Health Data Initiative
, which involves taking the datasets that HHS
has recently released to the public, incorporating other datasets
through partnerships, and inspiring a crowd-sourced app development
movement to help make sense of the data – with the ultimate goal of
having a positive impact on national health. (Here is a good
summary from e-Patient Dave
on e-patients.net.)
 
Most of the
data they have released is only as detailed as county level. I suggested
that the initiative could become more powerful and widespread in two
related ways: 1. by opening up more granular data and 2. by looking
beyond only corporate partnerships and tapping into the mass
self-tracking that engaged citizens are doing.
 
We have an
opportunity here to provide a list of recommendations to the White House
about how to engage with the self-tracking movement, possibly including
the creation of a citizen data commons.
 
The 3 questions
from the Community Health Data Initiative (CHDI) folks were:
1. How to deal with or integrate personal health data into the
data warehouse they’re building?
2. What should the government do or
worry about in the health data space?
3. What are the top things to
focus on that work to increase national health?
 
The participants
in this conversation were:
 
Roni Zeiger (Google Health)
Mike
Kirkwood (Polka)
Gilles Frydman (ACOR)
Christine Peterson
(Foresight Institute)
e-Patient Dave (e-patients.net, Society for
Participatory Medicine
)
Rachel Maguire (Institute for the Future -
IFTF
)
Rajiv Mehta (ZumeLife)
Steven Dean (Quantified Self)
Gary
Wolf (Wired, Quantified Self)
Lori Scanlon (PatientsLikeMe)
Alexandra
Carmichael (CureTogether, Quantified Self, IFTF)
 
[Commenting
later:  Brigitte Piniewksi, PeaceHealth Labs]

THE PERSONAL DATA CHALLENGE

 
Data is
crucial for knowledge. The Community Health Data Initiative involves a
laudable push to collect health data from many different institutional
sources and make it accessible to researchers and the public. But
something else is happening in the world of data that will eventually
overshadow this treasure trove of institutional  data both in size and
significance: this is the flood of numbers generated by individuals in
the course of their daily lives.
 
Personal health data is a
major, positive force for transforming the health care system.

 
Three
important trends converge here:
 
1.    A consensus that
self-care is important in achieving national health goals.
2.    The
failure of traditional medical record keeping to accurately describe
patient experiences; much less the full range of living conditions
relevant to health.
3.    The rise of new systems to collect and
understand personal data.
 
Personal data looks messy from a
traditional clinical or laboratory point of view. But powerful
techniques for analyzing messy data already exist, and they are rapidly
improving. Tools for collecting personal data are also getting better.
And self-tracking is becoming more popular. These factors are mutually
reinforcing: stronger analytical techniques; more accurate and
consistent collection; and vastly increased volumes of data create a new
landscape of public health knowledge.
 
What is the government’s
role? Our group found it easy to imagine ways that the government could
help. All of us are hoping for the emergence of a serviceable personal
data standard, along with a legal context that permits the social
benefits of sharing while punishing abuses of trust and privacy.
 
On
the other hand, after some discussion, we found ourselves skeptical
that personal data can ever be “warehoused” in the traditional sense of
being transmitted to a central institution for protection and
distribution. Implicit in the notion of personal data is the idea that
any aggregate resource may have millions – or billions – of
contributors. Such a resource is probably best served by a more complex
architecture, involving many nodes. The action will be in standards,
authorization protocols, conduits for data transfer, and legal
frameworks, rather than in traditional warehousing.
 
Since we
predict that size and value of personal data will dwarf the size and
value of the institutional data; and since we foresee a data
architecture involving many nodes, we are led to conclude that the
national health data warehouse is going to be a “virtual” warehouse,
defined by its standards and practices. At this early stage in the
evolution of this important resource, we would like to suggest two
principles. Here is our personal data challenge:
 
1.    Health
data systems should permit the inclusion of data generated by
individuals about themselves.
2.    Health data should not be
narrowly defined as medical data, nor should it be restricted to
predetermined categories. Individuals should be able to deposit any data
they consider important; social and/or scientific relevance should be
allowed to emerge after the fact.
 
These are principles. What
concrete actions can we recommend to the White House? Here are four:
 
1.   
Acknowledging the importance of self-collected, self-defined personal
health data
will be immensely helpful. There are many opportunities to
express this vision, and such reminders are powerful.
2.    The
government can also challenge us, as citizens, to collect some data
.
Just as the President’s Council on Physical Fitness helped introduce the
concept of fitness to tens of millions of Americans in the 1960s, so a
challenge to take stock of ourselves could be profoundly encouraging.
3.   
Personal data initiatives can be integrated into public institutions,
including community health clinics and schools. Model curricula and
self-tracking pilot projects could have wonderful side effects, engaging
students in science and teaching basic numeracy.
4.    Lead by
example: the national health data warehouse can provide a mechanism -
call it
yourdata.gov – by which individuals can optionally and
anonymously contribute their own personal data, and software authors can
easily contribute tools of analysis, visualization, and understanding.
We are willing to share advice and expertise, and to recruit others, to
design an appropriate, transparent, open architecture for yourdata.gov
that protects the privacy of contributors.
 
  
We believe that each
of these recommendations will advance the cause of public health. Simply
speaking up in favor of personal data, and in support of the notion
that health data warehouses should be open to individual contributions,
will open minds. Challenging citizens to participate will inspire
people. Assisting public understanding of personal data through pilot
programs and model curricula will build broad support. And the launch of
yourdata.gov will offer an example of how anonymous individual data
contributions can create something of value to science and medicine.
 
The CHDI’s last question, and perhaps their most important, was: “What are the top
things to focus on that work to increase national health?” We know how
important self-efficacy is for health: our lifestyle choices, our
engagement with the medical system, and even our participation, as
citizens, in improving the health of our communities depends on our
sense that we have the power to affect the future through our actions.
Systems that allow and encourage contributions of personal data will be
immensely valuable to doctors, researchers, and policy-makers. But the
greatest effect will be on ourselves, in the form of the power to know
ourselves better, and to make choices in the light of this knowledge.
 
Your
comments are welcome!

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4 Responses to Dear White House: The Personal Data Challenge

  1. Parin Stormlaughter says:

    Blogging this now.
    Beyond a great idea.

  2. Alexandra Carmichael says:

    Thanks Parin! Please let us know the link to your blog when it’s up.

  3. Alexandra Carmichael says:

    e-Patient Dave also posted his view of this discussion on e-patients.net – http://e-patients.net/archives/2010/07/dear-white-house-the-personal-data-challenge.html
    Thanks Dave!

  4. Jessica Wolfe says:

    So here is another important part of the real challenge: Bringing out of the silos and into the big conversation how OTHER professional sectors and individuals can help us improve our individual, community, and “national” well-being, across the lifespan. I would include in this interested, out of the box thinking, and highly creative people from: private and municipal master planning; architects; designers with expertise on public places; third places, universal design, and “aging-in-place;” landscape architects; real estate developers (yes!!) with a passion for long-term, dynamic, healthful projects; “aging”/life quality experts (including psychologists, sociologists and anthropologists); and transportation experts. Yes: There are LOTS of us, some with healthcare backgrounds, who cross this chasm and are looking to join the challenge!!!

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