Health and Medical News and Resources

General interest items edited by Janice Flahiff

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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