Tag Archives: time

Patient 2.0 empowers patients, worries doctors

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Writing for Time, Bonnie Rochman digs into the ramifications of patients sharing information and tips online, an “empowerment movement” she calls “Patient 2.0.” In the piece, she profiles the newly created Society for Participatory Medicine, which “encourages patients to learn as much as they can about their health and also helps doctors support patients on this data-intensive quest,” as well as PatientsLikeMe.com, a free service which makes its money by selling anonymized patient information.

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Photo by presta via Flickr.

One private-sector initiative already has about 50,000 patients inputting their symptoms and treatment regimens and updating details of their disease progression. Wonder how others are coping with your particular ailment? PatientsLikeMe.com spells it out via color-coded charts and graphs. “When you need help, privacy is a terrible thing,” says Jamie Heywood, who co-founded PatientsLikeMe in 2004 before his brother died of Lou Gehrig’s disease, or ALS.

Rochman demonstrated the strength of PatientsLikeMe in an anecdote in which data from the site’s users allowed administrators to reach clear conclusions about the effectiveness of lithium in the treatment of ALS six months ahead the formal clinical trials that were testing the same thing.

While medical professionals like those at the Society for Participatory Medicine have embraced the patient power movement, “plenty of doctors are worried about the quality of the information that is being assessed as well as patients’ ability to understand it,” Rochman wrote. A few have taken it upon themselves to fill the gaps, banding together to weigh in on the effectiveness of certain off-label treatments via Twitter, and to produce patient seminars on the reasons for clinical trials and the efficacy of various treatments.

NCHS: Patient 2.0 most popular use of health tech by far

The National Center for Health Statistics recently (Feb. 2) released statistics for the first half of 2009 on “Health Information Technology Use Among Men and Women Aged 18-64.” The stats show that “searching for health information online” is still the only use of health information technology embraced by a majority of American adults.

The numbers:

  • From January through June 2009, 51% of adults aged 18-64 had used the Internet to look up health information during the past 12 months.
  • Over 3% of adults aged 18-64 had used an online chat group to learn about health topics in the past 12 months.
  • Among adults aged 18-64, women were more likely than men to look up health information on the Internet (58.0% versus 43.4%) and were also more likely to use online chat groups to learn about health topics (4.1% versus 2.5%).
  • From January through June 2009, almost 5% of adults aged 18-64 had communicated with a health care provider by e-mail in the past 12 months.
  • During the first 6 months of 2009, 6% of adults aged 18-64 requested a refill of a prescription on the Internet, and almost 3% had made an appointment with a health care provider in the past 12 months using the Internet.
  • Among adults aged 18¬64, women were more likely than men to request a prescription refill on the Internet (6.6% versus 5.3%), make an appointment using the Internet (3.5% versus 1.8%), and communicate with a health care provider over e-mail (5.6% versus 4.2%).

Andrew Van Dam of The Wall Street Journal previously worked at the AHCJ offices while earning his master’s degree at the Missouri School of Journalism.

Attention focuses on football’s neurological effects

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Friday Night Lights author Buzz Bissinger, writing in Time, looks at two things he claims are being overlooked during the most recent uproar over football injuries: High school athletes and spinal injuries. Bissinger has strong opinions and two anecdotes, one of which includes a source who said that roughly two Texas high school football players suffer catastrophic spinal injuries each year.

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Photo by julio cesar via Flickr.

Bissinger praises Alan Schwarz’ work on concussions at The New York Times, but openly doubts whether the advances Schwarz is helping force at the professional level will ever translate to high school.

I know the focus will not trickle down to where it is needed most: the high school level. Research has shown that young players are far more susceptible than older ones to serious injuries. …

There should be an ambulance at every high school game. There should be trainers. But don’t bet on it, as school districts cry a lack of money. Kids will continue to suffer serious head injuries. Kids will continue to become paralyzed because they never learned how to properly tackle, with their heads up. The game’s violence will continue because that’s exactly why we like it, our gladiatorial lust still intact 16 centuries after the Romans. The bigger the hit, the greater the roar.

Not a new concern

In an Op-Ed piece in The New York Times, Deborah Blum, a professor of science journalism at the University of Wisconsin, writes about a warning published in The Journal of the American Medical Association that said the medical profession can no longer ignore that “There is a very definite brain injury due to single or repeated blows on the head or jaw which cause multiple concussion hemorrhages” in a report about professional athletes.”

But what really makes the research and its conclusions so interesting is its timing: it appeared in The Journal of the American Medical Association on Oct. 13, 1928. This raises the question – at least for me – as to why we are announcing the athlete concussion-dementia link as a new, and still somewhat debatable, issue some 80 years later.

House Judiciary forum

Watch a video webcast of the Feb. 1 “House Judiciary Committee Forum on Head Injuries and Other Sports Injuries in Youth, High School, College and Professional Football,” or read about Republican’s reluctance to hold said forum in Houston.

Dan Rather report

Dan Rather’s latest investigative effort was a far-reaching look at concussions and football, with emphasis on both the high school and professional games. He frames it as part of the pre-Super Bowl concussion awareness push (PDF Transcript).

ESPN to air ‘Head Games’

ESPN reporter Greg Garber, on “Outside the Lines,” will look at the issue of concussions and the NFL at 8 a.m. ET on Sunday. Harold Donald Carson, a former linebacker and inductee into the Pro Football Hall of Fame, “has become one of the leading spokesmen for the NFL’s retired players. Passionate and eloquent, he is in some ways the league’s conscience on the subject.”

Carson, who played 13 seasons for the New York Giants, estimates he suffered about a dozen concussions during his career, but none of them were documented. While he believes concussions among former football players will escalate into an epidemic, Dr. Joseph Maroon, the Steelers’ neurosurgeon for nearly three decades and a member of the NFL’s concussion committee for the past three years, disputes that:

“Because we know that there are millions of high school kids, college kids, youth leagues, as well as other who play football annually, I think we are not seeing the epidemic at that level people are speculating about,” Maroon said.

Related

Andrew Van Dam of The Wall Street Journal previously worked at the AHCJ offices while earning his master’s degree at the Missouri School of Journalism.

Researcher: Screening could save young athletes

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Writing for Time, Eben Harrell looks into whether athletes should be screened for cardiac problems in an effort to prevent sudden cardiac death (SCD). The condition, in which the heart suddenly stops working, is more likely to strike down athletes than it is their couch-potato counterparts.

There is evidence that screening, including the electrocardiogram, can prevent most cases of SCD.

Analyzing data from 42,000 athletes in the northeastern Veneto region of the country between 1979 and 2004, Italian researchers found that ECG screening resulted in an almost 90% drop in sudden cardiac deaths. Incidence of SCD among the unscreened non-athletic population did not change significantly during that time.

Noting the ECG’s shortcomings – it costs about $500 and produces false positives 7 percent of the time – Harrell adds that there is some evidence that a simple physical examination could be equally effective.

Related

Find tips about reporting on the health of student athletes and links to a number of articles, tip sheets, journal articles and other resources in AHCJ’s new “Reporting on sports injuries in school-age children” tip sheet.

Andrew Van Dam of The Wall Street Journal previously worked at the AHCJ offices while earning his master’s degree at the Missouri School of Journalism.