Epilepsy Talk

Groundbreaking Report: A Giant Step for Epilepsy | May 16, 2012

From Medscape Neurology

In a special presentation from the Institute of Medicine (IOM), a groundbreaking report was released with 13 recommendations that the IOM designed to help improve care for all people with epilepsy.

They include:

1. Validation and implementation of standard definitions and criteria for epilepsy case ascertainment, healthcare and community services use, and cost and quality measurement…

2. Continuation and expansion of collaborative surveillance efforts…

3. Development and evaluation of prevention efforts for epilepsy and its consequences…

4. Improvement in the early identification of epilepsy and its comorbid health conditions…

5. Development and implementation of a national quality measurement and improvement strategy for epilepsy care…

6. Establishment of epilepsy center accreditation and an epilepsy care network…

7. Improvement in health professionals’ education about the epilepsies…

8. Improvement in the delivery and coordination of community services…

9. Improvement in and expansion of educational opportunities for patients and families…

10. Provision of information to media to improve awareness and eliminate stigma…

11. Coordination of public awareness efforts…

12. Continuation and expansion of Vision 20/20 working groups and collaborative partnerships…

13. Engagement of people with epilepsy and their families in education, dissemination, and advocacy for improved epilepsy care and services.

There is complete consensus in the epilepsy community that these are all worthwhile goals.

What makes this report special, though, is that it has put epilepsy on the national agenda in the world of healthcare.

For full details, go to: http://www.medscape.com/viewarticle/763465


  1. Thank you for posting this Phylis!! This is phenomenal!!! This is huge!!! These are things so many of us have all fought, prayed, wished for and shouldn’t be let go until all people out there know what to do and understand Epilepsy. Also, letting those with Epilepsy have a major voice in decisions made with programs to support the epilepsy community.


    Comment by sunshinej716 — May 16, 2012 @ 11:11 PM

    • I read the first IOM report which updated the stats of epilepsy, then saying this should lead to a new initiative. But I never dreamt of this…


      Comment by Phylis Feiner Johnson — May 17, 2012 @ 8:07 AM

  2. Thanks GOD,

    Finally, there seems to be a light at the end of the tunnel.
    This is ended earth-shaking news, to centuries old under treated heath-problem.

    Phyllis, Thank you for the good news.


    Comment by Gerrie — May 17, 2012 @ 7:30 PM

  3. Fingers, toes and eyes crossed!


    Comment by Phylis Feiner Johnson — May 17, 2012 @ 10:36 PM

  4. Hi Everyone, this is amazing!!! Have you heard the latest in Epilepsy research?? This is so phenomenal and hopefully it will work for humans as well–they are testing it in humans I think she said in Sweden, but not sure—-
    Promising new epilepsy research | 6abc.com
    How dogs are paving the way to help people with epilepsy live a better life… Go to 6abc.com and its one of the side links….Anyone signed up to go to the Summer Stroll in Philadelphia?


    Comment by sunshine(Jeannie) — May 31, 2012 @ 11:26 PM

  5. Great article Jeannie!

    There’s a study in London that’s doing just the opposite: it’s sort of like inside-out EEGs. They call it “brain scanning,” recording subtle changes from outside the head.

    “The skull, spinal fluid and tissue on the scalp dampens the signals by about 50 or 100 times. These are very tiny changes,” Pedley said. “Until this study, no one knew it was possible to do it on the scalp with a standard EEG.”

    Promising stuff, eh?

    Did you see that the first article (the ABC one) said for further info contact http://www.efepa.com That’s my girls!
    Meanwhile no summer stroll for me. I have a broken foot. 😦


    Comment by Phylis Feiner Johnson — June 1, 2012 @ 8:01 AM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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