Comments on: Making Healthcare Better through Participatory Medicine http://epatientdave.com/2009/12/09/making-healthcare-better-through-participatory-medicine/ The Voice of Patient Engagement Wed, 08 Sep 2010 04:28:34 +0000 http://wordpress.org/?v=2.9.2 hourly 1 By: e-Patient Dave http://epatientdave.com/2009/12/09/making-healthcare-better-through-participatory-medicine/comment-page-1/#comment-120 e-Patient Dave Tue, 02 Mar 2010 21:24:06 +0000 http://epatientdave.com/?p=385#comment-120 Great to hear from you, Julie - it was a pleasure to see you then! Great to hear from you, Julie – it was a pleasure to see you then!

]]> By: JulieW8 http://epatientdave.com/2009/12/09/making-healthcare-better-through-participatory-medicine/comment-page-1/#comment-119 JulieW8 Tue, 02 Mar 2010 20:46:25 +0000 http://epatientdave.com/?p=385#comment-119 Congratulations to you and Dr. Sands! I saw your presentation at TEPR last year and enjoyed the first ever "TEPR tweetup." You two are awesome! Congratulations to you and Dr. Sands! I saw your presentation at TEPR last year and enjoyed the first ever “TEPR tweetup.” You two are awesome!

]]> By: e-Patient Dave http://epatientdave.com/2009/12/09/making-healthcare-better-through-participatory-medicine/comment-page-1/#comment-45 e-Patient Dave Sun, 20 Dec 2009 01:58:32 +0000 http://epatientdave.com/?p=385#comment-45 Pete, with all that's been going on, I just now took the time to absorb your comment. I'm moved - thanks so much. And congratulations on being a successful e-patient yourself! You should write it up for the "I am an e-patient" page. You exemplify the "<a href="http://e-patients.net/archives/2009/03/lets-hear-it-for-the-d-patient-e-patients.html" rel="nofollow">d-patient</a>" - doctors who become e-patients, finding information beyond what their own care providers could provide. That's a great kind of teaching, because it shows being an e-patient is not "anti-doctor" - and shows that it's unreasonable to expect that the end of all knowledge resides in any one person's head, even a doctor's. Pete, with all that’s been going on, I just now took the time to absorb your comment. I’m moved – thanks so much.

And congratulations on being a successful e-patient yourself! You should write it up for the “I am an e-patient” page. You exemplify the “d-patient” – doctors who become e-patients, finding information beyond what their own care providers could provide.

That’s a great kind of teaching, because it shows being an e-patient is not “anti-doctor” – and shows that it’s unreasonable to expect that the end of all knowledge resides in any one person’s head, even a doctor’s.

]]> By: Arlene Swirsky http://epatientdave.com/2009/12/09/making-healthcare-better-through-participatory-medicine/comment-page-1/#comment-41 Arlene Swirsky Wed, 16 Dec 2009 21:59:29 +0000 http://epatientdave.com/?p=385#comment-41 Well done and about time. I first journaled my experience with the life and death of my daughter Heather, who died of complications of Familial Dystautonomia. At the time of her birth in 1971, she was the first patient at Mass General suffering the syndrome. The information I needed to make her life tolerable to all of us was chronicled and published in the book ONE BRIEF SHINING MOMENT. My second book, REDISCOVERING MY INNER BITCH, was the coping technique I used during my wait, surgical experience and recovery from a renal transplant. It was published in 2007. There is so much information in both books, I have always tried to find a way to share the rather unique experiences I have had. Continue your good work and I will be a loyal subscriber to your blog. Well done and about time. I first journaled my experience with the life and death of my daughter Heather, who died of complications of Familial Dystautonomia. At the time of her birth in 1971, she was the first patient at Mass General suffering the syndrome. The information I needed to make her life tolerable to all of us was chronicled and published in the book ONE BRIEF SHINING MOMENT.
My second book, REDISCOVERING MY INNER BITCH, was the coping technique I used during my wait, surgical experience and recovery from a renal transplant. It was published in 2007.
There is so much information in both books, I have always tried to find a way to share the rather unique experiences I have had.
Continue your good work and I will be a loyal subscriber to your blog.

]]> By: F. Houston Galloway http://epatientdave.com/2009/12/09/making-healthcare-better-through-participatory-medicine/comment-page-1/#comment-37 F. Houston Galloway Fri, 11 Dec 2009 18:01:13 +0000 http://epatientdave.com/?p=385#comment-37 Dave, you have been such a pleasure to know. What an awesome person you are. You have made and are making a real difference in the world. Keep singing. Dave, you have been such a pleasure to know. What an awesome person you are. You have made and are making a real difference in the world. Keep singing.

]]> By: Alicia Staley (@stales) http://epatientdave.com/2009/12/09/making-healthcare-better-through-participatory-medicine/comment-page-1/#comment-36 Alicia Staley (@stales) Thu, 10 Dec 2009 02:58:40 +0000 http://epatientdave.com/?p=385#comment-36 Dave - Congratulations to you and Dr. Sands. I'm looking forward to watching how you lead the health care world into new territory! All the best. Dave – Congratulations to you and Dr. Sands. I’m looking forward to watching how you lead the health care world into new territory! All the best.

]]> By: Tweets that mention Making Healthcare Better through Participatory Medicine « e-Patient Dave -- Topsy.com http://epatientdave.com/2009/12/09/making-healthcare-better-through-participatory-medicine/comment-page-1/#comment-35 Tweets that mention Making Healthcare Better through Participatory Medicine « e-Patient Dave -- Topsy.com Thu, 10 Dec 2009 01:37:25 +0000 http://epatientdave.com/?p=385#comment-35 [...] This post was mentioned on Twitter by ePatientDave, BarbaraFicarra. BarbaraFicarra said: RT @ePatientDave: Acknowledging the participatory pioneers behind the "HealthLeaders 20" honor: http://is.gd/5he5Q [...] [...] This post was mentioned on Twitter by ePatientDave, BarbaraFicarra. BarbaraFicarra said: RT @ePatientDave: Acknowledging the participatory pioneers behind the "HealthLeaders 20" honor: http://is.gd/5he5Q [...]

]]> By: pnschmidt http://epatientdave.com/2009/12/09/making-healthcare-better-through-participatory-medicine/comment-page-1/#comment-33 pnschmidt Wed, 09 Dec 2009 22:49:55 +0000 http://epatientdave.com/?p=385#comment-33 Dave- Congratulations on well-deserved recognition. Too often, the self-appointed visionaries for health transformation have never experienced the kind of problem that puts them in that 5% of patients who generate 53% of the costs of care. You, thrown into such a position, have put both a human face on this minority and by exposing, for example, the weakness of billing-code based systems for the people who we need to empower the most (such as Google Health as I saw you do from your seat in the balcony at Health 2.0 Boston). You have effectively shifted the focus in the right direction. So many times, we trumpet health solutions that work for 90% of the population as critical advances, but that 90% represents a minority of the costs of care. I, myself, have turned the corner on a strange blood condition that has a frequency of one in a million and was unknown to the array of physicians who I saw over two years. A significant fraction of patients struck by the bad luck of injury or illness can be engaged to participate in their own health. I led a company making software to monitor and connect with their physicians patients with major depressive and bipolar disorders and at the end of a year-long randomized controlled study, we found that the sickest patients were the ones who were most engaged. What are most often missing are the tools and desire to support that engagement, and you are changing that. Kudos and congratulations. Pete Dave- Congratulations on well-deserved recognition. Too often, the self-appointed visionaries for health transformation have never experienced the kind of problem that puts them in that 5% of patients who generate 53% of the costs of care. You, thrown into such a position, have put both a human face on this minority and by exposing, for example, the weakness of billing-code based systems for the people who we need to empower the most (such as Google Health as I saw you do from your seat in the balcony at Health 2.0 Boston). You have effectively shifted the focus in the right direction.

So many times, we trumpet health solutions that work for 90% of the population as critical advances, but that 90% represents a minority of the costs of care. I, myself, have turned the corner on a strange blood condition that has a frequency of one in a million and was unknown to the array of physicians who I saw over two years.

A significant fraction of patients struck by the bad luck of injury or illness can be engaged to participate in their own health. I led a company making software to monitor and connect with their physicians patients with major depressive and bipolar disorders and at the end of a year-long randomized controlled study, we found that the sickest patients were the ones who were most engaged. What are most often missing are the tools and desire to support that engagement, and you are changing that.

Kudos and congratulations.

Pete

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