Data not drugs
Taking control of your health in the age of genetics
by Brian Ahier
http://radar.oreilly.com/2010/02/data-not-drugs.html

We have access to more health information now than any time in
history, yet this deluge of medical data may sometimes make health
decisions more difficult. The Internet has opened a Pandora’s Box of data
that can easily overwhelm us. We need a way to process all this
information to assist us in making better healthcare decisions. Sifting
through the barrage of health information writhing across the Internet
can be a challenge and new sources are continually cropping up.

There are some great online resources that can help. Search sites are
now guiding consumers to safe, trusted health websites, says Susannah
Fox of Pew Internet. Both Google and Bing are entering the health
search arena by providing a highlight at the top of health related
searches that allow you to access a wealth of information. Compare the
results of a search on “type 2 diabetes” from Google and Bing. While
they both present relevant articles from their libraries of health
resources and present a summary related to the query, so far I have
seen better results from Bing but Google is gaining fast. I expect both
will continue to refine these algorithms to improve results. Google has
also updated their popular Flu Trends providing flu info for 121 U.S.
cities. Previously, flu trends were available on a state and country level.

WolframAlpha can calculate clinical markers on cholesterol levels, BMI
and a wide range of indicators. WolframAlpha computes a breakdown of
total calories, fat, cholesterol, sodium, carbohydrates, protein, and other
particular nutrients of most foods. And then there is the incredible
Genetics Home Reference by the National Library of Medicine which
provides consumer-friendly information about the effects of genetic
variations on human health. The “type 2 diabetes” search here gives
some very interesting results with detailed genetic information and
many links to additional valuable resources.

One strategy to cope with all this data and help to create a framework
for our medical decisions is to use a decision tree. In his new book, The
Decision Tree: Taking Control of Your Health in the New Era of
Personalized Medicine, Thomas Goetz offers a structure to reduce
uncertainty and allow us to make better choices. I was fortunate to read
an advance copy of the book a few months ago and have had a series of
interesting conversations with Thomas since then to discuss some
aspects of the book. The decision tree is basically a flow chart to move us
towards better healthcare choices. I am most impressed that he could
take the rather complicated subject matter of personalized medicine and
distill it into layman’s terms that make for an interesting and compelling
read. The book will be released on February 16, 2010 and I highly
recommend it. You can read Chapter 1 today on The Decision Tree blog.

It is basically divided into three sections: prevention, diagnosis and
treatment; it is Thomas’s contention that we are all moving along this
spectrum and our baseline is our DNA. One of the themes of the book is
that by knowing and better understanding our genetic makeup, we can
improve the medical decision making process. Spring boarding from a
future of genetic medicine envisioned by Dr. George Church’s Personal
Genome Project he leads us to the current state of personalized
medicine with services like 23andMe and Navigenics which offer genetic
testing. But with the cost of these tests, is this really for the average
patient? “The price of genetic sequencing is falling rapidly," Thomas
said, "but I’m not actually calling people to start with genomics." There
are some basic starting points for using the decision tree strategy that
don’t wholly rely on having your genome sequenced. The widget below
gives you an idea of approach he takes:

The book describes his participation in a Quantified Self meeting, a sort
of show and tell for people taking advantage of various kinds of personal
tracking methods like geotracking, life-logging, DNA sequencing, etc.
They track the various metrics in an effort to find quantifiable meaning
to the data. These folks are "geeking out... just like the guys who stand
in line for iPhones and then rush home and take them apart to see how
they're made. They're just the same. Except in this case, the iPhones
are their own bodies." While it is important to have as complete
information as possible to make better choices that will improve our
health, he said, "Tracking your health with gadgets and gizmos is not for
everyone. But not long ago no one even knew what their blood pressure
of cholesterol level was and now tracking these metrics is quite
common." Tracking our health metrics and combining this with genetic
data to use as a starting point for a decision tree can help us to make
choices that will improve our health. Whether it is simply taking our
blood pressure, or using the Twitter-based GetUpAndMove service
started by Jen McCabe, keeping track of what our bodies are doing and
what we do with them is good data to have.

One of the problems we face in dealing with health issues is finding
drugs that actually help, and a chapter in Goetz's book deals with the
drug problem in healthcare today. While modern pharmacology has
developed many drugs that have saved and improved lives, finding the
right drug for the right condition is a challenge. And the blockbuster
model used for research and development in the pharmaceutical
industry is fading out. Some of the the promising drugs now in the
pipeline are designed for smaller groups of patients. But as chapter 8
points out:

The pipeline of new drugs has slowed to a crawl, as one promising
candidate after another has petered out in the last phases of
development. "The low-hanging fruit has been picked," says Derek Lowe,
PhD, a drug discovery chemist and industry pundit. William Haseltine,
PhD, a former researcher at Harvard Medical School and the founder of
Human Genome Sciences and eight other biotechnology companies,
notes that fewer than 1 in 100 new ideas reaches clinical trials and
fewer than 10 percent of these are approved for sale.

But developing drugs for less common medical problems will require
major changes for the industry. When promising molecules are found,
and the chemistry works, the drug companies are anxious to get these
to market. And all of those "failed" clinical trials (which may have
produced valuable data) are locked away, leaving possible medicine for
"lesser" conditions undiscovered. Goetz lays out a hopeful possible future
where we enter into a new era of research that will rescue drugs and
free the data that will help people to live healthier lives.

Drug ads are also sometimes misleading. By ambiguously defining who
might need or benefit from the products advertised, they focus "on
convincing people that they may be at risk for a wide array of health
conditions" rather than genuinely educating consumers, concluded a
2007 study in the Annals of Family Medicine. Drug manufacturers
maintain that their ads are not misleading. The Pharmaceutical
Research and Manufacturers of America, an industry group, says:
"Consistent with recently updated guidelines, PhRMA is committed to a
fair balance of risk and benefit information in all direct-to-consumer
advertising." The "brief" summaries in direct-to-consumer drug ads can
take up a whole magazine page, and make it very difficult for a
consumer to understand and weigh the risks and benefits of the
medication.

Drug fact boxes are a possible solution that could eliminate a lot of the
ambiguity. These user friendly boxes, similar to the nutrition labels
found on food, include facts not found in the so-called brief summaries.
They are the brainchild of a husband-and-wife team: physician-
researchers Lisa Schwartz and Steven Woloshin from the Dartmouth
Institute for Health Policy and Clinical Practice. In a study published by
the Annals of Internal Medicine, they tested how much consumers could
benefit from understandable information on drug products. The data
were collected via mailed surveys measuring respondents' reactions to
two drug fact boxes versus traditional direct-to-consumer
advertisements. One trial compared two potential treatments for
heartburn and the other compared two potential preventive medications
for cardiovascular events. Of respondents who received the drug fact box
on heartburn, 70 percent were able to correctly identify the most
effective treatment, as compared to 8 percent of the control group. It's
obvious that drug fact boxes have the potential to improve consumers'
knowledge of the potential benefits and side effects of medications. The
FDA is considering requiring factboxes so there is hope but the wheels of
government grind slowly.

The book lays out three fundamental principles for making intelligent
health choices. Number one is early is better than late. By learning
genetic predispositions we can treat disease, sometimes before it even
happens. Number two is let the data do the work. Using evidence-based
medicine and monitoring the continuous stream of data we create,
whether it be our diet, exercise, moods or DNA, gives us a baseline from
which we can evaluate our future health. And number three is openness
is a powerful thing. The more accurate information available to
researchers, care providers, and consumers, the better decisions we can
all make and the more options we will have for successful outcomes.

By making the most of the new science and technologies available and
using the best practices from genetics, behavioral science, and
information technology we have the opportunity to sculpt a process to
better manage our health. Putting the patient at the center of
healthcare and creating a strategy to process all of health data available
today is a great start towards meaningful healthcare reform. While
Congress debates payment methodologies, health insurance, and all of
the political considerations which crowd into the discussion, we the
people can take more control of our health today. After all, they are our
bodies...

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