[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

Related articles

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

• Are you an ePatient? (enbloommedia.com)
• The Rise of the e-Patient: Slideshow  (ScienceRoll)“It’s always good to see the trends about the growing number and importance of e-patients. Lee Rainie, director of the Pew Internet Project, presented this wonderful overview of the Project’s health findings at Providence St. Joseph Medical Center in Burbank, CA, on January 12.”
• Why patients are turning less to media and friends for health information  (jflahiff.wordpress.com)
• Can differential diagnosis be crowdsourced to Facebook Friends?(medgadget)
• ePatient Connections: A Patient Checks In. (sixuntilme.com)
• From E-patient Hackers to Health Games on Mobiles (scienceroll.com)
• The end of social – O’Reilly Radar (queuniversidade2.wordpress.com)
• Meet e-patient Dave – a voice of patient engagement (and related resources) (jflahiff.wordpress.com)
• 2020 Vision: The ePatient Evolution Over the Next 10 Years (prweb.com)
• ePatients Come Together to Brainstorm and Share (brassandivory.org)
• 6 P’s Of Social Health (socialmediaclub.org)
• The Rise of the ePatient – presentation by Pew Internet Project (casesblog.blogspot.com)

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

 

 

• New Genetic Disorder Found In Kids; Symptoms – Tearless Crying, Liver Disease
• Patients who question their doctors are changing the face of medicine
• IBM’s Watson To Be Used For Cancer Treatment
• The next step for smart phones could be keeping tabs on patients
• Patient friendly doctors
• patient representative

Consult with a librarian to find information more efficiently and effectively! (peer reviewed study summary)

 

http://www.rluk.ac.uk/node/657

From the Science Intelligence blog item

A recent study has has found quantitative evidence of a significant difference in search performance between paediatric residents or interns assisted by a librarian and those searching the literature alone.

Each participant searched PubMed and other online sources, performing pre-determined tasks including the formulation of a clinical question, retrieval and selection of bibliographic records. In the assisted group, participants were supported by a librarian with ≥5 years of experience. The primary outcome was the success of search sessions, scored against a specific assessment tool.

To read in Health information and Libraries Journal:***
http://onlinelibrary.wiley.com/doi/10.1111/j.1471-1842.2011.00957.x/abstract

*** This article is only available online through paid subscription.

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