Esther Dyson on the Digital Health Revolution

Scribe Media’s Peter Cervieri interviews Esther Dyson, board member of 23andMe and one of the PGP-10.

Esther Dyson Video Scribe Media

In the interview, Esther gives her views on the history of commerce on the internet, problems with health care as we know it in the U.S., and the future of genetics.

Leroy Hood on the Future

Leroy Hood, tireless generator of good quotes (among other things):

My prediction is that within 10 years, we will have a predictive medicine that will have two separate components.

No. 1, it will have the ability to sequence every human’s genome for
less than $1,000. We will be able to make predictive health histories for each individual from the varying genes that come from that
sequencing.

Perhaps a better term than predictive health histories is
health futures.  Is it me, or does having health sandwiched between predictive and history feel claustrophobic?

No. 2, we will have a little hand-held nanotechnology device that
will prick your finger and make a thousand measurements and by
wireless, send that to a server. It will analyze all your past records.

It will say, "Nothing’s changed. You’re fine. Do it again in six
months." Or it will say, "Go see your oncologist or go see your
rheumatologist" or whoever might be appropriate.  Your physician would get an e-mail, too.

There’s more from Leroy:

Take into account that your genome and mine differ by 6 million
nucleotides…

We have to treat you differently than we treat me and everybody
else. How we create an era of highly personalized medicine will depend
entirely on new diagnostic, therapeutic and ultimately, these
preventive techniques.

What we’ll do is feed your genome sequence into a grid network of
computers that will do many different kinds of analyses simultaneously.
You’ll get a summary sheet that says here are the things and here are
the probabilities that you’ll likely have to worry about in the future…

Oh yeah, and this is good too..

It takes five years for people to get anything. The first few times
they hear it, they can think of a thousand reasons why it’s wrong.
Then, after they’ve heard it a few more times, it starts to sound more
logical.

If you’re a missionary, you’ve got to be patient with your
congregation. We are at the very beginning stages of thinking about
this.

Read the whole piece in the SeattlePI.

Francis Collins on Personalized Medicine

So, what’s in it for me? That question probably crossed many minds five years ago following the news that scientists had successfully assembled the first draft of the human genome — the genetic blueprint of a human being. The answer for most of us was ”not much."

What a difference five years can make. Today, we are witnessing a
revolution in the understanding of health and disease, spurred on by
the sequencing of the human genome and the subsequent creation of a map
of human genetic variation. And, like most historic movements, this
revolution has been given a name: personalized medicine.

Francis S. Collins. Personalized medicine: A new approach to staying well. July 17, 2005

Telegenetics

"In the era of postgenomic medicine, the provision of genetics testing, counseling, and associated services is becoming a critical part of many patient encounters.  Innovation in the profession related to the delivery of services, especially with the utilization of distance technologies such as telemedicine, will be essential to providing genetics services to the population. Telemedicine is one of the dimensions of “e-health,” defined broadly as the use of advanced information technologies to improve health care delivery and education. This concept refers to a fundamental redesign of health care processes based on the use and integration of electronic communication at all levels. Telemedicine services will likely progress to include Internet- enabled consultations, leading to more geographic freedom for the patients instead of being restricted to the fixed set of sites within a specific delivery network. E-health leads to patient empowerment, which describes the transition from a passive role where the patient is the recipient of care services to an active role where the patient is informed, has choices, and is involved in the decision-making process."

J. Mitchell and George Demiris. "Telegenetics: The next phase in the provision of genetics services?" Genetics in Medicine, January 2005, p.1-2.

Swedish LifeGene Project

The Swedes have proposed what they are calling the "most comprehensive medical project" since the human genome.  The project has a tentative name, LifeGene, and the goal is to combine "biological information with lifestyle data" from a population of 500,000 people in order to get a "greater understanding of the interplay between heredity,
lifestyle and the environment in relation to the most common diseases."

Another article summarized the project as follows: "This study…uses IT and mobile technology to
enable people to report details of their health and their lifestyle. LifeGene aims to collect biological samples, demographic and
lifestyle information from healthy volunteers, and examine these with
information from Sweden’s unique population-wide registers. These
include a twin register, a cancer register and a cause of death
register. The fact that Sweden has a uniform governmental healthcare
system facilitates access to information about patients and possible
tissue samples."

Links:
CORDIS release
Karolinska Institute release
Stockholm Business Arena write-up discusses LifeGene (in the context of a call for even larger population studies)

Genomics DTC

"Consumer access to predictive testing is gated by primary care providers, who are expected to offer education, informed consent, interpretation of test results, genetic counseling, and follow-on care. There is increasing evidence that this channel is ineffective.

Few primary healthcare providers have the time or specialized training to provide interpretation or counseling. Many are uncomfortable providing such services. While there are specialists trained in genetics and genetic counseling, most are involved in prenatal diagnosis or treatment of genetic disease in children.

Managed care providers and payers have not invested in the resources necessary to deliver quality genetic services at the scale required to meet consumer demand. There is little economic incentive to offer predictive genetic testing given the near-term cost of tests and support services, consumer transience, and the long-term economic benefits that accrue from disease prevention. Moreover, disparities in access to healthcare and limited utilization of the health system for wellness in general, further limit consumer access to these products…

A DTC channel that provides consumers with direct, confidential access to genetic testing services could redress the limitations of the current system."

This from Fred Ledley and Harold Washburn in a December’s DTC Perspectives Magazine.  Fred Ledley, a medical doctor, is one of the few to address the challenges and opportunities of bringing genomics to consumers.  At a conference in Portugal in 2001, Ledley summarized these challenges and opportunities:

"I believe we are on the verge of an explosion of opportunity arising from genomics. The self-knowledge that comes from genetic testing will enable individuals to take control of their own health and make informed decisions about how to protect health and prevent disease. How will our healthcare system respond when consumers begin walking into doctor’s offices and saying "I would like to be tested for APOE", "I would like to be tested to see which drugs are safe".

Some applications of genomics will fit will into medical practice…Few physicians, however, are using genetics to identify predisposition to disease, to counsel patients in how to avoid environmental factors which may be particularly severe risks to that individual, or to choose drugs that are most likely to be safe and effective. There is little tradition of this type of practice within primary care. While the medical community may develop the capacity to deliver some of these services, I believe we will also see the emergence of new mechanisms which enable individuals to decide on their own what genetic tests would help them make decisions about health and wellness, pay for these tests themselves, and control the privacy of their own genetic information.

I believe that one of the most exciting frontiers in medicine is to understand how we will integrate genetic tests [involving] thirty, forty or a hundred thousand genes into clinical practice, how we will respond to consumer interest in genomics, and how we will use this information to achieve real improvements in personal health."

Fred Ledley and Harold Washburn. Can DTC Deliver the Health Benefits of Genomics to the Public? DTC Perspectives Magazine, December 2004.

Fred Ledley. The Future of Genomic Testing. Presentation in Apifarma, Portugal. November 2001. (.doc)

Here is a bio of Fred Ledley.

Medical Future

"Richard A. Young imagines a health-care system in which, shortly after a baby is born, doctors take a tiny piece of tissue and test its genes to predict the baby’s future.  "We could explain to you the probability that you’ll have breast cancer in your 40s…or that you’ll have heart disease in your 50s, and–here’s the good part–that before you get there, we can develop therapies to prevent that." "

Carlene Hempel, Scientist hopes to see medical future — and improve it. Boston Globe, Feb 17 2004.

Medical Tourism

"Many people from the developed world come to India for the rejuvenation promised by yoga and ayurvedic massage, but few consider it a destination for hip replacements or brain surgery.  Yet that’s exactly what the government in the Indian state of Maharashtra hopes will happen soon."

Ben Wright, Maharashtra woos medical tourists, BBC Feb 10 2004.

Prospective Care

Laura Landro, Preventive Medicine Gets More Aggressive; The ‘Health Coach’, WSJ Feb 12 2004. (subscribers only)

"The new approach is called "prospective" rather than "preventive" medicine. It uses patient medical histories to identify people at the greatest risk of developing specific diseases, and takes steps to intervene early to prevent their onset. The key is getting the patient far more involved. It’s really prevention plus personalization: Every patient gets a health risk assessment, a personalized health plan and direct involvement in setting his or her own health goals. One pioneering program even provides "health coaches" and support groups to help carry them out…"

A couple insightful quotes from members of the medical community in the article:

"We have to find a way to raise the value of preventive self-care so people can set priorities for their own health," says Michael Johns, executive vice president for health affairs and director of the Robert W. Woodruff Health Sciences Center at Emory University…"

… "What we are trying to do is be on the leading edge of a change in how health care will be delivered in the next five years," says Ralph Snyderman, Duke’s chancellor for health affairs. "We want to get beyond disease management into a focused, realistic way to have early detection and early intervention — not with a cookie cutter approach to every patient but by tailoring it to the individual."

Several organizations pioneering prospective medicine that are mentioned in the article are Duke University’s Prospective Health Program and the Seattle-based Group Health Cooperative.

Landro also mentions a recent paper by two researchers at the Yale School of Medicine, Mary Tinetti and Terri Fried.  She summarizes their argument as thus, "doctors must shift their focus from treating disease alone to tailoring treatments to individual patient needs."  The article is for subscribers only (or for those willing to shell out a hefty $30), but the abstract is free online.  Here is the info: 

Mary Tinetti and Terri Fried, The End of the Disease Era.  American Journal of Medicine. 116(3):179-185.

Abstract:

"The time has come to abandon disease as the focus of medical care. The changed spectrum of health, the complex interplay of biological and nonbiological factors, the aging population, and the interindividual variability in health priorities render medical care that is centered on the diagnosis and treatment of individual diseases at best out of date and at worst harmful. A primary focus on disease may inadvertently lead to undertreatment, overtreatment, or mistreatment. The numerous strategies that have evolved to address the limitations of the disease model, although laudable, are offered only to a select subset of persons and often further fragment care. Clinical decision making for all patients should be predicated on the attainment of individual goals and the identification and treatment of all modifiable biological and nonbiological factors, rather than solely on the diagnosis, treatment, or prevention of individual diseases. Anticipated arguments against a more integrated and individualized approach range from concerns about medicalization of life problems to “this is nothing new” and “resources would be better spent determining the underlying biological mechanisms.” The perception that the disease model is “truth” rather than a previously useful model will be a barrier as well. Notwithstanding these barriers, medical care must evolve to meet the health care needs of patients in the 21st century."

 

IBM and Information-Based Medicine

Nancy Weil, New IBM Unit Integrates Drug Research, Healthcare. HealthIT World. Jan 13 2004.

"IBM has started a new business unit focused on medicine within its life science division, promising to help customers integrate healthcare data, including research, genetic tests, patient medical records, clinical trials records, and medical images…IBM has coined the phrase ‘information-based medicine’ to describe its approach to integrating, mining, analyzing, and managing medical data from a variety of sources."

"…’What we see happening is the convergence between life sciences, healthcare, and IT,’ [VP Mike] Svinte said. ‘The thought is that convergence really has the ability to change the way healthcare is delivered, to change the diagnosis and treatment.’"

"…The field of information-based medicine is so new that a successful business model has not yet been clearly defined…The key question is who will pay for such data-integration systems."

 

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