Tag: Personalized Medicine

Entering the era of participatory medicine

I’ve returned from a week of Health 2.0 immersion on the west coast. The top-line finding: we’ve entered the period we can call Participatory Medicine. For some, like the pioneering Gilles Friedman of ACOR, this is nothing new. Other people have never heard of it. It’s global. It’s local. It’s a movement and a verb, as I pointed out thirteen months ago following the inaugural Health 2.0 conference.

Here are some reflections…

On Tuesday, I appeared on a panel on Health 2.0 at the Commonwealth Club in San Francisco for KQED public radio, sponsored by the California HealthCare Foundation. The Club’s motto by founder Edward Adams is, "We only propose to find truth and turn it loose in the world." My fellow panelists resemble that remark! They were the inspiring Amy Tenderich, founder and blogger of Diabetes Mine; and the ebullient, motivating and insightful Dr. Ted Eytan, now with Kaiser Permanente. We riffed on the roots of H2.0, the risks and benefits of people sharing health information and opinions online, and prospects for the future. Amy and Ted were stellar and shared their special perspectives as patient and doctor, respectively. When the podcast online is available, I will point you to it.

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MRIS: The good, the bad and the useless

Note: This post first appeared at

Gina Kolata’s must-read article in last week’s Science Times points out vast differences in the quality of MRI’s as well as vast differences in the expertise of the radiologists who interpret them.

Patients need to understand this, because physicians sure as Hades aren’t going to tell you.

Kolata uses sports injuries as example. With suspected cancers, the stakes are life and death. A poor MRI was part of the reason my daughter nearly failed to get a proper diagnosis of a malignant sarcoma in her arm, and then nearly failed to get the proper treatment.

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Moving forward on genetic testing

Scott_shreeveThree months ago,
there was a huge hubbub about genetic testing in California. In a
dramatic effort, albeit totally misguided, the California Department of
Health sent “cease and desist
letters to multiple vendors who were offering genetic testing services
directly to the consumers. They were concerned by the cost, the
accuracy, the ability for medical professionals to interpret the
results, and the potential for harm to the consumers. However, with
many technology advances that outpace the regulatory apparatus, this
one was well ahead of its time and when the dusts settles, this type of
testing will become a normal part of your health portfolio.

Need proof?

This week Microsoft, Scripps Health (based in San Diego), Affymetrix and Navigenics
announced they are launching a research study to evaluate the impact of
personal genetic testing. The study will offer genetic scans to up to
10,000 employees, family and friends of Scripps Health system and will
measure changes in participants’ behaviors over a 20-year period.
Participants will be able to save a copy of their genetic information
and analysis in HealthVault, enabling them to retain it for future use
as they continue to manage their health and wellness, whether it is for
preventative or treatment purposes.

From Cease and Desist, to a public announcement from all California
based companies on a landmark longitudinal study with 10,000 people
validating the use of personal genetic information in just over three

Stylin’ and profilin’ Cali Style.

Health 2.0 for cancer trials

Greg is well known to THCB readers as a long term commentator on the oncology scene with a  keen interest in chemotherapy assay testing. Here he writes about a new type of clinical trial — Matthew Holt

The traditional meaning of Health 2.0, according to Jane Sarasohn-Kahn’s "Wisdom of Patients" has been the use of social software and light-weight tools to promote collaboration between patients, their caregivers, medical professionals and other stakeholders in health.

An example of this in cancer medicine is Individualized Online Clinical Trial Protocol Version 1.0 by the Weisenthal Cancer Group, a Phase II evaluation of individualized cancer treatment with traditional cytotoxic chemotherapy, targeted anti-kinase drugs and anti-angiogenic agents.

With most clinical trials, investigators never give out information as to how people are doing. Most trials are failures with respect to actually improving things. The world doesn’t find out what happen until after a hundred or 500 or 2,000 patients are treated and then only 24 hours before the New England Journal of Medicine publication date.

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Using professional societies to advance participatory medicine

Dan Hoch is a neurologist based at Massachusetts General Hospital
and an assistant professor at Harvard Medical School. An early
developer of online resources for patients, Dan helped found Braintalk.

Professional medical societies are not quite like the secret society Skull and Bones at
Yale University, but they may well look that way to many patients.

In most cases, their sole reason for being is to serve their members in a pretty narrowly defined way. These services generally include continuing medical education programs, an annual meeting, promoting research, advocating for public and political awareness of the value of the specialty, providing resources to support clinical practice, and more mundane perks like access to group insurance (malpractice and otherwise).

If you define the mission of the society a little less narrowly, and it’s not hard to see how that mission can be aligned with that of participatory medicine. We often argue on the e-patients blog that full participation of all parties in health care will yield better, more efficient care. Such care will benefit the members of a professional society. Further, patients are taking part in research not just as guinea pigs, but as organizers and directors. This benefits the societies’ research missions. But, are medical societies poised to understand this, and if so, how do we guide them?

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Whose DNA is it anyway?

News of the California Health Department’s mailing of cease and desist letters to 13 direct-to-consumer genetic testing firms, such as 23andMe, Navigenics and DeCodeMe, has sparked intense debate over balancing regulations to guarantee quality and individual rights to genetic data.

Here on THCB, Matthew Holt called the move the "first establishment challenge of Health 2.0."

"This is a case where the regulations are running way behind the technology, and the trade protection organizations of health care providers are, I’m sure, whispering in the ear of the regulators," Holt wrote.

Why all the fuss now?

CA regulators say doctors must be involved in ordering and deciphering the genetic tests, which currently are offered directly to consumers. Currently, customers pay about
$2,500 at Navigenics for an initial one-year membership — and then an
annual fee of $250.
23andMe and DecodeMe both charge about $1,000 for permanent access.

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The Talking Cure: moving patients to the center of care

The relationship between patients and doctors is fundamentally changing. Transparency in medical records, patients’ accessibility to health information online, and online social media driving patient-to-patient conversations are some forces at the base of the future of health care.

This, according to a thought-provoking report that addresses the evolving nature of patients vis-à-vis physicians in the National Health Service (NHS) in the U.K. These factors are also driving change in health and health care in the U.S.

The Talking Cure: Why Conversation is the Future of Health Care is an essay published in mid-May 2008 by two smart guys at Demos. As the National Health Service in the U.K. approaches its 60th birthday, the Demos research organization launched The Healthy Conversations project (now known as The Talking Cure) to engage stakeholders in and outside of the NHS in a dialogue of how to move patients to the center of health in the U.K.

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Podcast with Marston Alfred, founder and architect of SugarStats

Marston Alfred, founder and chief architect of chatted recently with me about his relatively new, Web-based program that allows diabetics to track their health statistics online.Sugarstats_2

Alfred described SugarStats as a portable PHR specifically for diabetics. He hopes diabetics use it to share their progress with others, such as family and doctors, and that by doing so it will improve their adherence to diet, exercise and medication schedules.

SugarStats launched publicly a year ago. It currently has about 4,000 users and gets an average of 10,000-20,000 unique visitors each month.

A diabetic himself, Alfred talks about the need for SugarStats and his hopes for the company’s future. Listen to the podcast.

E-patients can and will revolutionize health care

By taking advantage of new online health tools, e-patients and health professionals
now have the ability to create equal partnerships that enable individuals to be equipped, enabled, empowered and engaged in their health and health care decisions.

That was the vision of Dr. Tom Ferguson, who coined the term e-patients and launched in 2006. Ferguson intended to upload his book-length overview of the online health revolution, “E-patients: How They Can Help Us Heal Health Care.” But unfortunately, he died a month later 2006, after losing a fifteen-year battle with multiple myeloma.

Following Ferguson’s death, a group of his friends and colleagues completed the paper and adopted the blog to carry on his work, as well as our own. Each blogger brings a different perspective when commenting on Health 2.0 developments.

We think the “E-patients” paper remains relevant in 2008 (PDF, wiki) and we hope to extend the findings into the future. To that end, we are also working on the creation of the peer-reviewed Journal of Participatory Medicine with the help of Sarah Greene of the New York Times; Bruce Shriver, PhD, of the Liddy Shriver Sarcoma Initiative; and George Lundberg, MD, of Medscape. We welcome your comments and suggestions.

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Going off the Grid – The Rise of ‘Direct Practice’ Medicine

Grid (grĭd) n.

1. Something resembling a framework of crisscrossed parallel bars, as in rigidity or organization

2. An interconnected system for the distribution of electricity or electromagnetic signals over a wide area, especially a network of high-tension cables and power stations.

3. The interconnected system employed by the Medico-Industrial complex to create a third party payment systems which artificially creates complexity, increases costs, reduces quality, eliminates accountability, and destroys the patient-physican relationship.

As has been documented in this blog, I have been on a health care finance reform journey for the last six months. I was fortunate to be given the opportunity to work with Lemhi Ventures (outstanding group of health care innovators) on looking at new models of health care delivery, financing, and insurance. During the course of that project, I learned a ton about the nature of health insurance, current status of health plans (there has been plenty of interesting news the last six months on them here, here, here, and here), followed closely the presidential debates on health care reform and become familiar with many of the innovators within this space (Prometheus, Alan Goroll, etc)

A new article just published by MDNG Live (the same magazine that featured my cover story “Meet Your New Patients” last month) showcases Jay Parkinson with the catchy title, “Jay Parkinson Sells Out!” Catchy because one thing I don’t think you will be able to call Jay is a sellout. In fact, his “stick to my guns; this is how I believe medicine should be practiced” approach has enamored him to the public media and vicariously documented the groundswell of interest in this “new” health care delivery model. “New” in quotes, of course, because there is nothing new about this model of care delivery – a patient and a physician entering into a trusted relationship wherein the physician provides services that are valued by the consumer who pays cash for them. The millennial update is that physicians can now do this in new ways, with new devices that have become commonplace in every day life except for in the inane and archaic world of health care.

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