Dear White House: The Personal Data Challenge
July 20, 2010
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?
in this conversation were:
Roni Zeiger (Google Health)
Gilles Frydman (ACOR)
e-Patient Dave (e-patients.net, Society for
Rachel Maguire (Institute for the Future –
Rajiv Mehta (ZumeLife)
Steven Dean (Quantified Self)
Wolf (Wired, Quantified Self)
Lori Scanlon (PatientsLikeMe)
Carmichael (CureTogether, Quantified Self, IFTF)
later: Brigitte Piniewksi, PeaceHealth Labs]
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.
important trends converge here:
1. A consensus that
self-care is important in achieving national health goals.
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.
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.
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:
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:
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.
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.
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.
comments are welcome!