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

Why we need to go from e-patient to i-patient (insurance savvy patient)

From the 3 February 2012 KevinMD column  by Jackie Fox

I found a recent Associated Press article on an aspect of the new health care law that many of us may have overlooked. It requires consumer-friendly summaries of what insurance plans cover, a provision that now seems to be at risk. The insurance industry is up in arms about implementation costs and added regulatory burdens. (There’s a good story at NPR, which includes a link to an example of what the language would look like.)

 

My initial thought was what a shame it would be to lose that provision. But then my mind flipped to the e-patient movement and how it’s teaching people to be active participants in our medical care. That means learning as much as we can about our conditions and treatment options and sometimes questioning our doctors’ recommendations.

It occurred to me that when we focus only on doctors, we’re missing a very sizable forest for the trees.  One of the overriding concerns of health care reform is getting costs under control. …

This is where I think the “i-patient” needs to step up: “i” for insurance-savvy. We should be demanding to know what insurance companies’ decisions are based on when they deny a claim. My oncologist told me one of his denials was based on the assessment of a general practitioner hired by the insurance company. Without the specialized knowledge of blood markers an oncologist has, this doctor didn’t realize that the normal marker used as a basis for denial wasn’t a good indicator. Where does that leave my oncologist and his decades of experience?  Like he told me, “Medicine is not like taking a car to a shop.” Patients need to know about this. When selecting an insurance company, we should know which ones have the worst record of denying claims.

We also should be keeping a close watch on electronic medical records, beyond simply demanding access to our own records. I recently read a fascinating post by Adam Sharp, MD, founder of par80 & Sermo, called “Why EMR is A Four-Letter Word to Most Doctors.” He explained how EMRs were largely a top-down effort, allowing third parties to implement policies by simply removing options from the EMR.  “If you can’t select a particular treatment option, for all intents and purposes, it doesn’t exist or the red tape to choose it is so painful that there is little incentive to fight the system.”…

…We need an i-patient movement to make sure our voices are heard and our choices are preserved. We need to ensure those choices are made in partnership with our doctors, not handed down to both of us by some invisible third-party payer. We have a Society for Participatory Medicine (I’m a member); maybe it’s time we had a Society for Participatory Insurance. Because our doctors can’t fight this battle alone.

 

 

February 8, 2012 Posted by | health care | , , | Leave a comment

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

[While I have some major concerns about this video, since it was at the blog item, I decided to add it anyway.

In my humble opinion the background music is too gloomy, the use of some declatatory statements seem to false imply “all”, and it seems to foster an “us” versus “them” mentality that in the long term may be unhelpful…

Still, it does emphasize that people can be empowered through reputable information and interacting with other like-minded and similarly educated folks]

A quick reference for becoming an empowered patient

Excerpts from the blog item by Fred Trotter at O’Reilly Radar- Insights, Analysis, and Research about Emerging Technologies

 help build open source software tools that patients can use to have greater control and influence over their own healthcare (like the Direct Project and Your Doctors Advice). As as result, I’ve become quite familiar with other tools that do the same sorts of things. There is a community of patients who are deeply interested in the ways in which they can become more engaged and how they can specifically use technology to achieve this. This community calls themselves epatients. The epatient community asked me to write a short collection of resources for “becoming an epatient.”

The “e” in epatient is intentionally obscure. The initial assumption is that the “e” stands for “electronic,” as it does in “email.” But in fact, the “e” stands for “engaged” or “empowered.” Nonetheless, reference to email is intentional: The epatient community recognizes that leveraging data is a critical part of empowering a person who happens to be sick. Patients must be “electronic” to become fully “engaged.” I think of epatients as the healthcare equivalent of makers and hackers. More importantly, they are the people I have in mind when I write software….

Let’s go over some simple concepts that the rest of my epatient advice and resources are based on:

  • Your doctors are probably not managing your healthcare information. You should assume it is your responsibility. Otherwise, the people involved in your treatment process will often presume that this information simply does not exist.
  • Other patients, with similar conditions to yours, can have better information about your health problem than your doctors have.
  • Like the highway system, the healthcare system is generally beneficial, but there are dangers, and you need to learn to avoid them.

And here are two things you should keep in mind:

  • Whenever I say “patient,” I actually mean “the patient/caregiver team.” Often, the patient will not have the energy to do what is necessary to be fully engaged. It is critical that when the patient cannot be an epatient, that at least the patient’s team be an epatient proxy.
  • In regard to the “better information” I mentioned above, I don’t mean that your doctor is typically wrong and another patient is typically right about your diagnosis or treatment options. While that does happen on occasion, it is not the norm. Another patient’s information is “better” because your doctor typically does not have the visceral experience of being a patient. Your doctor doesn’t understand which lotion can make all of the difference or what position might let you get some sleep after a rough procedure. There is simply no substitute for experience. Sometimes that experience can make your life a little easier, and sometimes it can help you get the right treatments that literally will save your life. (This is the gist of epatient Dave deBronkart’s story.)

Read the entire blog item (including descriptions and links to epatient communities)

For a long time now patients have been meeting in online (and offline) communities, sharing experience, advice and more recently data and measurements. And the health care system–which knows that communities improve health–has done virtually nothing–other than some doctors having doctors answer questions on MedHelp. That is just starting to change. Last year Geisinger did a small trial with dLife that showed improvement in diabetics outcomes. More recently Aetna inked partnerships withMindBloom and OneRecovery, two communities focused on spirituality and addiction, and today Diabetic Connect (part of Alliance Health) announced a deeper integration with the Joslin Diabetes Center. It’s been a while, but the heart of Health 2.0 (communities) are starting to move towards the mainstream.

January 9, 2012 Posted by | Consumer Health, health care | , , , , | Leave a comment

   

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