Health and Medical News and Resources

General interest items edited by Janice Flahiff

[News item’ The patient from the future, here today

Two thoughts on disparities highlighted in the article
What about folks who do not have the background and access to resources to self diagnose? In all countries, “developed” (as USA, most of Europe) and “developing” (asmuch of Africa, parts of Asia…)

Is it ethical for some health information to be physician/research access only?

 

From the 5 March 2014 UT-San Diego article

By 1997, those irregular heartbeats became common, leading to “hundreds and hundreds” of serious episodes, capable of causing death. She eventually received an ICD, an implanted cardioverter-defibrillator, which would shock her heart back into the proper rhythm.

Goodsell began studying her condition, drawing back on her own education. While she has no medical degree, Goodsell had been a pre-med student at UC San Diego, where she met Charles, who was studying chemistry. She dropped out after falling in love with nature during a trip to Peru.

Looking for that unifying theory, Goodsell delved into genomics, searching for mutations that could encompass her symptoms. She found it with a gene called LMNA, that codes for making proteins called lamins that stabilize cells. Defects in these proteins can cause a form of Charcot-Marie-Tooth disease, damaging nerves in the extremities and causing muscle wasting, including in the hands.

Symptom after symptom checked with the mutation. But to be sure, she needed a genetic test, and her Mayo doctors resisted.

Taking the research into self-therapy, Goodsell researched risk factors associated with the disease, examining what goes on at a molecular level. She changed her diet: Out went sugars, out went gluten and any food with additives. And out went a beloved snack.

“I used to eat bowls of jalapeño peppers. I discontinued.”

But she added certain fats she had previously avoided, such as omega-3 fatty acids and nuts, which are rich in fats.

“Cell membranes are fat, and we need fat — good fat,” she said. “I was advised to start eating fat.”

Goodsell said her symptoms improved. Control over her hands improved enough to allow her to eat with chopsticks and to resume kitesurfing.

Goodsell’s doctor wrote up her case history, listing her as co-author “because he said I had done the lion’s share of the work.” The study is to be presented at an upcoming meeting of the Heart Rhythm Society.

 

Read the entire article here

Epatients: The hackers of the healthcare world [O’Reilly Radar]

Meet e-patient Dave – a voice of patient engagement (and related resources)

 

 

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March 21, 2014 Posted by | health care | , , , , , , , | Leave a comment

People are growing their health-consumer muscles in 2013 | Health Populi

People are growing their health-consumer muscles in 2013 | Health Populi.

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From the 31 July 2013 article at HealthPopuli

Most Americans are concerned about their ability to for medical bills, even when they have health insurance. As a result, most are comfortable asking their doctor about how much their medical treatment will cost. People are becoming savvier health care shoppers largely because they have to: 37% of people in the U.S. have an annual health insurance deductible over $2,000, according to the Spring/Summer 2013 Altarum Institute Survey of Consumer Health Care Opinion, published on 11th July 2013.

Many of the media stories coming out of the Altarum survey since its publication have been about people and their trust in doctors – or lack thereof.

But the other side of this coin is growing patient/consumer health empowerment.

It appears that people feel competent to take on a greater role in shared decision making, self-diagnosis or assessment of symptoms, and information collecting on conditions – even before seeing the doctor. Take a look at the table, which illustrates that most do “health homework” before going to see their doctor.

Altarum polled a survey sample of 2,357 U.S. consumers in May, 2013.

Health Populi’s Hot Points: The internet has truly become a go-to source for people and their health, every day. I grew up with a thick tome of a health guide on my parents’ living room bookshelf – I remember a dog-eared Mayo Clinic Guide to Health, as well as a Merck Manual my mom picked up from a library sale in the early 1970s and her nutrition bible, Adelle Davis’ Let’s Get Well.

Today’s 5-inch-thick guide to health isn’t a book at all; it’s WebMD, NIH.gov, FDA.gov, Yahoo! health groups, WEGO Health, PatientsLikeMe, CureTogether, DiabetesMine, TuDiabetes, Migraine.com – and to be sure, Paging Dr. Google. And, it’s also friends and neighbors, whose opinions 75% of Americans trust to choose a doctor – more than online rates on a doc’s bedside manner, office waiting times, or objective information on clinical quality, according to Altarum’s poll.

What Altarum finds is that people are preparing in advance of their doctor’s appointments – preparing questions, which means spending time thinking through symptoms, family histories, observations of daily living, and other factors that may feed into an acute situation or a question about how to stay well, fit, and out of the health system.

Related Resources

 

August 1, 2013 Posted by | health care, Health Education (General Public) | , , | 2 Comments

   

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