Consumer driven genetic testing

Naomi Freundlich. Genetic Predictions: Just a Swab Away. New York Times. March 21 2004.

"Genetic testing and counseling, of course, have been available for many years. Doctors may decide to screen patients for various genetic disorders, like Tay-Sachs disease, based on a family’s medical history. But Genelex’s drug metabolism test branches into something new: genetic tests initiated by the consumer. The medical profession is still divided, however, over whether such tests are always a healthy idea."

"The tests aim to capitalize on the desire to harness the vast amount of information emerging from the recently completed Human Genome Project. The project, publicly financed, has provided scientists with a list of the more than 30,000 human genes. Now the race is on to figure out how slight variations in these genes can affect an individual’s future health - how they might make people more prone to heart disease or cancer, for example. Preliminary data about such connections is building, and some companies have decided to act early and provide this kind of lifestyle risk information to curious consumers."

Read the whole article.

Several of the companies mentioned:
Genelex
Genova Diagnostics
DNA Direct, Inc.

March 20, 2004 | Filed Under direct-to-consumerdtc, genetic-testing, medical-consumerism | Comments Off 

Fuqua Pushes Natl Health Info Network

"Duke University’s Fuqua School of Business on Tuesday announced it is launching an initiative to gain widespread consumer support for a national electronic health information network.

The goal of the initiative, named the Health Data Exchange, is to improve the quality of health care while reducing costs, said Kevin Schulman, M.D., director of the Health Sector Management program at Fuqua.

The initiative represents a new approach to the development of an electronic health information network.

"Instead of focusing initially on the technology — a ‘build it and they will come’ approach — we have outlined a consumer-first strategy," Schulman said. "Through public outreach and education, Health Data Exchange plans to build consumer understanding and acceptance of a national health network as well as strong motivation to participate in the exchange via voluntary submission of personal health information."

A national electronic health information network would make patient medical information available online to medical providers, insurance companies, pharmaceutical companies and other segments of the health care industry. Patients would provide their medical histories to the network through an Internet site. Updates to each patient’s medical records would occur automatically each time the patient seeks medical care or fills a prescription.

Although several groups would have access to anonymous medical histories, only those with specific authorization from individual patients would be able to access a patient’s medical record with his or her name attached."

Read the whole press release here.

March 3, 2004 | Filed Under electronic-health-records, health-it, medical-consumerism | Comments Off 

Personal Digital Doctor

"Ideally, a patient with an incurable, life-threatening disease such as diabetes would take critical medical measurements at home each day, and immediately get advice from his or her doctor. While that remains impractical, new hope is on the horizon for digital monitoring systems that will help to fill this yawning gap—and to provide clues to each patient’s treatment that no doctor could ever gather manually. This summer, Joslin will partner with Boston startup InterMed Advisors on a trial of one such alternative—a soup-to-nuts home monitoring system for diabetes patients. The InterMed project will combine patient education, daily in-home monitoring of blood glucose levels, and advanced analysis of the wealth of resulting data. It will also alert clinical staff as needed, and provide patients with daily, individualized feedback."

Eric Bender, Your Daily Digital Doctor, Technology Review, Feb 20 2004.

February 20, 2004 | Filed Under diagnostics, disease-management, future-healthcare, medical-consumerism, personal-health-tech | Comments Off 

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.

February 16, 2004 | Filed Under future-healthcare, medical-consumerism, medicine | Comments Off 

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."

 

February 12, 2004 | Filed Under future-healthcare, medical-consumerism, medicine, preventiveprospective-medicine | Comments Off 

HealthMaps

Another information thepary oriented product, this one from InterMap Systems is called the HealthMap Platform.  Check out this page to download a flash demo.

January 13, 2004 | Filed Under education, medical-consumerism | Comments Off 

Attitudes of Consumers on Genetics

CogentResearch Press Release, Americans Ready to Use Genomics to Optimize Diet And Health.  November 17, 2003.

Three-fourths of Americans are interested in obtaining their personal genetic information to identify their risk of diseases such as cancer, osteoporosis, and heart disease, and nearly half of Americans are ready to use diet-related products tailored to their health needs based upon their genetic make-up, according to a recent research study presented at the Second Annual International Nutrigenomics Conference in Amsterdam, the Netherlands.

"A survey of 1,000 Americans conducted by Cambridge-based Cogent Research, LLC, found that a majority of Americans are receptive to the idea of using genetic information to optimize health…’Americans are ready and willing to buy products based upon their genetic information, but the science is only in the early stages of being able to deliver,’ said Christy White, principal of Cogent Research. ‘The good news is consumers aren’t looking for complete diet regimens, but for individual products and basic recommendations’…

"The survey reveals that more than 90 percent of Americans are aware of the connection between diet and health, and 71 percent believe genetics play a crucial role in health throughout life. However, 73 percent are concerned about how personal genetic information would be stored and who would have access to that information. The findings are part of a broader, syndicated research study on genomics that explored solutions including pharmaceuticals, health and beauty products, and nutrition. It marks one of the largest efforts to understand consumers’ acceptance of using their DNA information to influence the balance between health and disease."

December 22, 2003 | Filed Under genetic-testing, medical-consumerism, nutritional-genomics, opinion-research | Comments Off 

More on Information Therapy

In a recent post, I mentioned a new service sector referred to as "information therapy."

The Center for Information Therapy, a division of Healthwise Inc., describes information therapy as "the prescription of the right information to the right person at the right time to help people make wise health decisions. Unlike free-floating health content on the Web, information therapy prescriptions are delivered to the patient as part of the process of care, with only the information relevant to his or her current moment in care."

Information therapy augments medical care in a way that informs patients about the process of care specific to their illness.  Here are some examples of an Information Prescription (Ix).

December 9, 2003 | Filed Under education, medical-consumerism | Comments Off 

Information Therapy

Beckie Kelly Schuerenberg. A Prescription For Information: A Seattle health care organization embraces new method for delivering patient education. Health Data Management, November 2003.

Group Health Cooperative…offers patients secure, Web-based access to their health data—such as lab results—from its site, along with links to information to further help them understand diseases, conditions and more.

“Many people view health care as a ‘black box’ operation where it’s difficult for consumers to know what’s going on and understand what things mean,” says [James Hereford, executive director of health informatics at Group Health Cooperative]. “People want to receive more information from their provider. They want information embedded into the care process…The Internet represents a way to extend the integration of health care information into patient care beyond the bricks and mortar of our facilities,” he says. “And the initiative is constantly evolving because we’re always reacting to new health care information.”

The Group Health Cooperative webpage is here.

 

November 30, 2003 | Filed Under education, medical-consumerism | Comments Off 

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