Healthcare NBIC

Google Health 2018: Best -- and Worst -- Case Scenarios

On the face of it, Google Health released this month in beta is just another personal medical record system similar to a hundred others including Microsoft's HealthVault. But Google has designed a specifically open health record: providers, payers and all kinds of service companies can use the published Application Programmer Interface to link their data to your Google health file.

Since Google is not a healthcare provider, the privacy restrictions of HIPPA, the Health Insurance Portability and Accountability Act of 1996 don't apply. Health IT security guru Fred Trotter describes why this is a good thing, and we went brainstorming to see how open architecture might affect wellness, sex, eldercare, insurance and other health concerns.

Read Google Health 2018: Best Case Scenarios.

Read Google Health 2018: Worst Case Scenarios.

The glass is half-full or half-empty. Add your comments below, and or a different comment perspective, see the thread on these articles at Slashdot.

Dark Side of the Internet: Pro-Anorexia Sites

We're always seeking to enhance healthcare choices under the assumption that the more information we have, the more control over our health we exercise, the better off we'll be. Some of the choices we make are questionable: following fad diets or quack cures; modifying our bodies with tattoos, implants or sex changes; leading sedentary lives filled with trans-fats and sugared colas. Western society tolerates the odd choices, preferring more information rather than less, but sometimes information can kill us.

A pilot study published in the journal Pediatrics, "Surfing for Thinness", examined adolescents use of web sites that promote anorexia and bulimia. (These sites are often called pro-ana and pro-mia sites. See one logo at left.) The study estimates that there are approximately 500 pro-eating disorder (pro-ED) web sites, outnumbering the anti-ED/pro-recovery sites about 5 to 1.  Like the health-interested web user population at large, up to two-thirds of adolescent girls surf the web for health information, nearly half looking for ways to lose weight. In a survey of teens, 96% said they learned new weight loss or purging techniques from the pro-ED sites. (The study also noted that some web sites also influence drug use in youth and promote anti-health behaviors such as self-injury, suicide, and smoking.)

Obviously, parents have to be aware of their kids' Internet use and be alert to signs of eating disorders in general. At About.com, Dr. Vincent Iannelli offers some advice to parents. But after the child is grown, there's no way to stop her or him from surfing sites that promote bad health. Authorities in Madrid recently shut down a pro-anorexia web site as a hazard to children, but the free-wheeling information economy of the global Internet won't always be there to save us. We'll have to be sure we make the right health choices.

The "Ashley Treatment": Hard Choices for Life Enhancement

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"I think most people, when they hear of this, would say this is just plain wrong," Brosco said. "But it is a complicated story, and when you get into this issue, you can understand the difficulties.

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That's Miami pediatrician Jeffrey Brosco talking about the case of "Ashley," a nine-year-old girl with static encephalopathy, severe brain damage that leaves her bedridden, unable to roll over or sit up by herself, fed by a tube. Her parents say she hasn't shown material in mental ability since she was three months old. They call her a "Pillow Angel" because she tends to stay where they put her -- and because they love her deeply.

What makes the story complicated is the treatment Ashley's parents designed for her, in consultation with doctors and ethicists at Seattle Children's Hospital and Regional Medical Center. In July 2004, they removed her uterus so she wouldn't mentruate or have cramps; they removed her early breast buds so she wouldn't have fully developed breasts; they administered high dose estrogen therapy to attenuate growth; and they removed her appendix to avoid a potential appendicitis that she wou;dn't be able to tell anyone about. The result is that she will remain 4 ft 4 in tall and about 75 lbs for the rest of her life, making life more comfortable for her and making it easier for her parents to care for her at home.

Ashley's doctors Daniel Gunther and Douglas Diekema broke the story in an article in the AMA journal Archives of Pediatric and Adolescent Medicine titled Attenuating Growth in Children With Profound Developmental Disability: A New Approach to an Old Dilemma. In the same issue, an editorial by Dr,  Jeffrey Brosco (quoted above) and Dr. Chris Freudtner  explored the ethical dilemma and asked four questions: Will it work? Is it unacceptably unnatural? Could it be misused?  And -- tellingly -- does it detract from the argument for more spending on home health care?

An on-line Reuters story and MSNBC message board ignited the debate, and yesterday a syndicated LA Times story by Sam Howe Verhovek expanded the discussion on-line, in print and finally on TV (after the g-d pre-roll ad).

Life enhancement innovations like cosmetic neurology, 20-15 LASIK, non-therapeutic abortion, body modification and other elective surgeries are an inevitable part of medical care in a free society. Enhancing the life of your child should be included in that list. Ashley's parents have published a heart  rending anonymous blog of supreme, clear-eyed love and honesty called The Ashley Treatment. They describe how they came to the decision, explain the details in-depth, and try to cope with some of the knee-jerk vilification they've received since the story got out. To them, it was an easy decision: they wanted their daughter to be happy. In the process, they've advanced an important discussion in healthcare immeasurably.

Walmart's Loss Leaders: First Beyonce, Now Prozac (fluoxetine hydrochloride)

In the new year, Walmart now offers a $4 prescription price on more than 300 generic drugs in all Walmart controlled pharmacies in 49 U.S. states. As we saw in the previous posts Walmart's Tough Choices and  Walmart Medical Clinics, disruption is bound to happen as 21st Century business comes to grips with the 20th Century way we have of handling healthcare.

The pricing power of Walmart and its willingness to discount deeply to get customers into the store has already transformed the music industry. The list price on Beyonce's second solo album B'day is $18.98, but you can get it at Walmart for $11.98. (You can alternately download the album's three good tunes -- including the currently hot $3.49 single Irreplaceable -- for just 88 cents apiece.) Now they're selling the generic form of Prozac for just $4 for a month's supply versus the $33 average  branded price.

In the study Market power in music retailing: the case of Wal-Mart published in the academic journal Popular Music and Society, Mark A. Fox analyzes how Walmart's discounting changed the record business by highlighting only sure-fire bestsellers. More ominously, he describes the content decisions Walmart forces on artists: no cover art or lyrics that are too sexy, no songs denigrating Walmart, and no albums with Parental Advisory stickers.

Walmart's ability to drive down the cost of genercic drugs is a good thing. But in the pharmaceutical context, questions arise: "How does Walmart decide which generics to offer at low cost?" I didn't see a Contraceptive category, for example, although in the Hormones category medroxyprogesterone AC is listed in 2.5, 5 and 10 mg dosages. "What influence does commerce have on medicine?" There are lots of cardiac and diabetes offerings, but only one generic cancer drug and two Parkinsons generics. Chronic patients with repeat business seem to get a better break than short-timers who get cured or die. "How will Walmarts' near-inevitable monopsony power --  its control over suppliers -- influence pharma companies' choices in drug discovery, packaging and dosage. " Walmart prefers Splenda, so Coca-Cola had to change its new product to use Splenda. When it comes to medicine the potential for nutty conspiracy theorists is astounding.

Enhancement Amok: Barry Bonds' Choices

The notion that the patient knows what's good for him gets kicked in the head with the chilling story of baseball's Barry Bonds and his long-time affair with drugs to improve his game. A Sports Illustrated  excerpt from the new book Game of Shadows by Mark Fainaru-Wada and Lance Williams (see video interview) describes the Bonds regimen and the coterie of semi-medical experts pushing him drugs:

In addition to growth hormone and testosterone, doping calendars showed that Bonds used insulin along with steroids; the drug's anabolic effect was significant, especially when used in conjunction with growth hormone. He also popped Mexican beans, fast-acting steroids thought to clear the user's system within a few days. The label of the container read, "Andriol. Undecanoato de testosterone" -- in English: testosterone decanoate. Early in the 2001 season, the calendars indicated Bonds tried trenbolone, a steroid created to improve the muscle quality of beef cattle. Within the year it would be the chemical foundation for a new formulation of the Clear, the undetectable steroid Conte obtained from an Illinois chemist, Patrick Arnold.

The SI.com web package presents the issue from all angles, describing how athletes and their facilitators lied, cheated and broke the law while chasing record book glory, fan acclaim and multi-million dollar paychecks.

Panexa: Ask your doctor [parody]

A direct-to-consumer drug advertisement headlines:
Panexa. Ask your doctor for a reason to take it.

The Merd Pharmaceuticals Group's prescribing information for Panexa (Acidachrome Promanganate) says that the prescription drug "should only be taken by patients experiencing one of the following disorders: metabolism, binocular vision, digestion (solid and liquid), circulation, menstruation, cognition, osculation, extremes of emotion." Side effects are novel: "PANEXA can contribute to developing inhumanly powerful tongue muscles, capable of licking through steel." Pregnant women and squirrels have special warnings, but the best line is about the pediatric use:

Pediatric use: Expired PANEXA may be disposed of by feeding to children in a bowl with milk.

Of course, it's all a well-crafted joke. But there's a Cafe Press gift site where you can buy a Panexa T shirt or mug for the doctor on your list who needs another freebie pharma tshatshke.

We'll be talking about direct-to-consumer advertising at the Health IC Summit next month in the Healthcare Consumerism session.

Home HIV Tests vs Medical Paternalism

Last week, the U.S. Food and Drug Administration held a meeting to consider whether a popular rapid HIV test used in clinical laboratories should be approved for home use. The  OraQuick ADVANCE Rapid HIV-1/2 Antibody Test from OraSure Technologies used oral fluid specimens swabbed from the outer gums and provides results within 20 minutes at home. (An example of a positive result -- two horizontal lines in the test window -- is shown at left.)

In the hands of professionals, the OraQuick test has a long and successful track record. The FDA is obviously concerned that the test should be simple for untrained consumers to perform and to evaluate, but as long as it works well enough, who could object?

Medical professionals could object. A Boston Herald story points out that the glass is half empty: Solitary suffering risk with at-home AIDS tests. The chief of the infectious diseases center at the Boston Medical Center notes that professional testing is "a great opportunity to connect people to a mental health clinician, doctor and nurse. All that goes away with home testing.” That may be true, but consumers deserve to know on their own.

I'll bet the home HIV test gets approved, but the much larger issue -- the professionals' reflexive disdain for self care -- is only going to get hotter. In an excellent opinion piece in TechNewsWorld titled Forward Future Requires Past Principles, Sonia Arrison, director of Technology Studies at the Pacific Research Institute, makes the case:

Life, liberty, and the pursuit of happiness are core human rights that should be the foundation of all policy. Every individual should have the ability to avoid death and pursue survival. Regulations that ban life-saving procedures or tests, such as a ban against at-home AIDS tests, violate this right.

 

Dr. Google Saves a Baby

Over 73 million Americans use the Internet to answer health questions, harrying their doctors with self-diagnoses and putting stress on the physician-patient relationship. Medical web sites, disease discussion forums and health blogs give the "Worried Well" an endless supply of symptoms and therapies to ponder.

But sometimes, the Internet can save some pain, some suffering -- and some billing. An article in the Google Blog reports on a premature baby admitted to an ER with very low hemoglobin levels. ER doctors told the parents that an immediate emergency blood transfusion was necessary, but Dad whipped out his Palm computer and Googled the Web. He found an on-line article in American Family Physician that a hemoglobin drop in premies was  "not uncommon." After a respectable period of further study, the docs agreed that the kid was fine. Dad wrote:

Google literally saved our newborn son from having to endure an extremely dangerous, and totally unnecessary, blood transfusion.

Maybe Googling should be added to the list of standard medical practices.

To Scan or Not to Scan: A $300 Question

In the wake of some high profile lung cancer news this month, an AP story today by Marilynn Marchione, "Smokers Flock to Hospitals for Cancer X-Ray," reports on the stampede of smokers who are signing up for CT scans that could potentially spot tumors long before they show up on a conventional x-ray. The deaths of ABC newsman Peter Jennings and Dallas star Barbara Bel Geddes, and the recent lung cancer diagnosis of Dana Reeve, wife of actor Christopher Reeve, have heightened U.S. cancer awareness.

As we wrote last month, advances in digital imaging techniques are producing stunning CT images that look more like living tissue and less like black-and-white x-rays. Marilynn's article quotes individuals who have signed up for the $300 scans -- not necessarily covered by insurance -- in order to get "piece of mind" rather than the diagnosis of a current condition. The resolution of CT scans is so good that minor lumps and bumps may cause false positives for cancer, potentially resulting in unnecessary biopsies and surgeries.

While some eminent physicians have recommended early CT scans, the American Cancer Society, the federal government and  "a raft of cancer specialists" caution against the test until a huge new study proves that such early detection is worthwhile --  so that it would be covered by insurance. One hospital lung specialist even stopped her at-risk 82 year old mother from getting scanned. Maybe it means a possible false positive, but it seems to me that $300 is small price top pay for your mother's piece of mind.

At-Home Pharmacogenomics: Mail Order DNA Tests

"The Perfect Gift for the Genetic Age"

Doctors prescribing medicines use way too much trial and error to match drugs and doses. If the first prescription doesn't work, they try a different drug, change the dosage or start looking for interactions with other drugs the patient is taking. Success is counted when the side effects are not too gruesome and the patient improves.

Pharmacogenomics, combining pharmaceutical knowledge with our increasing understanding of the human genome, analyzes a patient's genotype to find prescriptions that maximize effectiveness and minimize side effects. It can also reduce adverse drug reactions, a major cause of healthcare mortality.

Ten years ago, genetic testing like this was strictly a laboratory affair. Today, you can do it at home with products like Genelex's mail order DNA test kits that screen for drug reactions, identify disease tendencies and even check ancestry and paternity. Tests cost anywhere from $250 for an identity profile to $1,590 for a Platinum Package.

The Genelex web site is split into branches "For the Public" and "For Medical Professionals." It's the public side that suggests DNA testing as a nice gift ... maybe for Fathers Day or Valentines Day, I guess.