e-Patient Judy Feder:<br />Patient Community Knowledge Saves a LifeComments on: -- http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html because health professionals can't do it alone Sat, 11 Feb 2012 08:53:56 +0000 hourly 1 By: e-Patient Dave http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html/comment-page-1#comment-81516 e-Patient Dave Thu, 07 Jul 2011 21:18:06 +0000 http://e-patients.net/?p=1648#comment-81516 Hi Richard - "our" Judy's time ran out a year ago. <a href="http://e-patients.net/archives/2010/05/e-patient-judy-feders-time-runs-out.html" rel="nofollow">Here's our post</a> about her passing. Not sure if she's the one you seek, because the obituary.com entry says she graduated from Princeton in 1978. Hi Richard – “our” Judy’s time ran out a year ago. Here’s our post about her passing. Not sure if she’s the one you seek, because the obituary.com entry says she graduated from Princeton in 1978.

]]> By: Richard Fankhauser http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html/comment-page-1#comment-81515 Richard Fankhauser Thu, 07 Jul 2011 21:06:33 +0000 http://e-patients.net/?p=1648#comment-81515 ARe you the Judy Feder that went to the Hebrew Academy on Miami Beach in the 79's? If so Mr Fankhauser would like to know how you are doing. ARe you the Judy Feder that went to the Hebrew Academy on Miami Beach in the 79′s? If so Mr Fankhauser would like to know how you are doing.

]]> By: e-Patient Judy Feder’s time runs out | e-Patients.net http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html/comment-page-1#comment-53479 e-Patient Judy Feder’s time runs out | e-Patients.net Wed, 26 May 2010 12:37:45 +0000 http://e-patients.net/?p=1648#comment-53479 [...] sad to report the passing on April 23 of Judy Feder, who shared her powerful e-patient story here just a year ago. Please re-read how, through her e-patient community (BCMets), she learned of [...] [...] sad to report the passing on April 23 of Judy Feder, who shared her powerful e-patient story here just a year ago. Please re-read how, through her e-patient community (BCMets), she learned of [...]

]]> By: Matthew Holt http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html/comment-page-1#comment-55970 Matthew Holt Tue, 25 May 2010 23:09:07 +0000 http://e-patients.net/?p=1648#comment-55970 <span class="topsy_trackback_comment"><span class="topsy_twitter_username"><span class="topsy_trackback_content">Very sad news RT @SusannahFox: Remembering Judy Feder http://bit.ly/rYDTH (just learned of her passing) #tears was in #health2con vid in 09</span></span> Very sad news RT @SusannahFox: Remembering Judy Feder http://bit.ly/rYDTH (just learned of her passing) #tears was in #health2con vid in 09

]]> By: SusannahFox http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html/comment-page-1#comment-53454 SusannahFox Tue, 25 May 2010 21:34:38 +0000 http://e-patients.net/?p=1648#comment-53454 <span class="topsy_trackback_comment"><span class="topsy_twitter_username"><span class="topsy_trackback_content">Remembering Judy Feder http://bit.ly/rYDTH (just learned of her passing) #tears</span></span> Remembering Judy Feder http://bit.ly/rYDTH (just learned of her passing) #tears

]]> By: MPS PAPAS » La sabiduría de las comunidades de pacientes http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html/comment-page-1#comment-51521 MPS PAPAS » La sabiduría de las comunidades de pacientes Thu, 11 Mar 2010 19:48:19 +0000 http://e-patients.net/?p=1648#comment-51521 [...] activas y pobladas en las que la sabiduría del conjunto puede superar al del ente individual. En el caso que tuve la oportunidad de leer hace unos días, una “e-paciente”, enferma de cáncer de mama [...] [...] activas y pobladas en las que la sabiduría del conjunto puede superar al del ente individual. En el caso que tuve la oportunidad de leer hace unos días, una “e-paciente”, enferma de cáncer de mama [...]

]]> By: Eduardo Alvarado http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html/comment-page-1#comment-47930 Eduardo Alvarado Thu, 24 Sep 2009 10:13:46 +0000 http://e-patients.net/?p=1648#comment-47930 Judy: This is one of the most amazing, inspiring stories I've ever heard. Again, it shows that patients need to be encouraged and that physicians MUST BELIEVE in patients, WORK with patients and MAKE DECISSIONS with patients. Had the pleasure to meet you on Toronto, did not know your story by that time (wish I could have said thank you for this life teaching!) Eduardo Alvarado MD Lima, Peru Judy:
This is one of the most amazing, inspiring stories I’ve ever heard. Again, it shows that patients need to be encouraged and that physicians MUST BELIEVE in patients, WORK with patients and MAKE DECISSIONS with patients.

Had the pleasure to meet you on Toronto, did not know your story by that time (wish I could have said thank you for this life teaching!)

Eduardo Alvarado MD
Lima, Peru

]]> By: ePatientDave http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html/comment-page-1#comment-50011 ePatientDave Fri, 18 Sep 2009 21:23:15 +0000 http://e-patients.net/?p=1648#comment-50011 <span class="topsy_trackback_comment"><span class="topsy_twitter_username"><span class="topsy_trackback_content">#med2 Phenomenal epatient Judy Feder http://is.gd/3pYeg speaking in CR2</span></span> #med2 Phenomenal epatient Judy Feder http://is.gd/3pYeg speaking in CR2

]]> By: Immediate data requested. Please share with breast cancer patients everywhere. | e-Patients.net http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html/comment-page-1#comment-20764 Immediate data requested. Please share with breast cancer patients everywhere. | e-Patients.net Fri, 01 May 2009 02:36:57 +0000 http://e-patients.net/?p=1648#comment-20764 [...] Following my amazing experience with Her2 testing and Herceptin, as chronicled in my guest post Patient Community Knowledge Saves a Life, I’ve been motivated and encouraged to take patient power into our own hands and create a [...] [...] Following my amazing experience with Her2 testing and Herceptin, as chronicled in my guest post Patient Community Knowledge Saves a Life, I’ve been motivated and encouraged to take patient power into our own hands and create a [...]

]]> By: Publicidad y Salud » La sabiduría de las comunidades de pacientes http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html/comment-page-1#comment-16851 Publicidad y Salud » La sabiduría de las comunidades de pacientes Tue, 14 Apr 2009 06:29:39 +0000 http://e-patients.net/?p=1648#comment-16851 [...] activas y pobladas en las que la sabiduría del conjunto puede superar al del ente individual. En el caso que tuve la oportunidad de leer hace unos días, una “e-paciente”, enferma de cáncer [...] [...] activas y pobladas en las que la sabiduría del conjunto puede superar al del ente individual. En el caso que tuve la oportunidad de leer hace unos días, una “e-paciente”, enferma de cáncer [...]

]]> By: e-communities, e-participation and e-risk! « Sterena - Health Communication Meets The Participatory Web http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html/comment-page-1#comment-14445 e-communities, e-participation and e-risk! « Sterena - Health Communication Meets The Participatory Web Wed, 01 Apr 2009 15:05:20 +0000 http://e-patients.net/?p=1648#comment-14445 [...] e-patient Judy Feder recently discussed how patient community knowledge saved her life. Specifically, she talks about her participation in her e-community and how she wouldn’t be alive without it. She states, “If for no other reason, I love my e-community because I can sound off about the shortcomings of cancer vocabulary.” Generating a host of interesting comments on her post, e-patient Dave commented, “This is a key thing for us all to realize as we continue moving into the world of participatory medicine: it’s AMAZING how much information people can absorb when their lives depend on it.” What exactly does “e” mean you might be asking? Patterns of “e” mean empowered, engaged, equipped and enabled. But empowered to what end? Engaged for whom? Equipped with what resources? Enabled to do what? [...] [...] e-patient Judy Feder recently discussed how patient community knowledge saved her life. Specifically, she talks about her participation in her e-community and how she wouldn’t be alive without it. She states, “If for no other reason, I love my e-community because I can sound off about the shortcomings of cancer vocabulary.” Generating a host of interesting comments on her post, e-patient Dave commented, “This is a key thing for us all to realize as we continue moving into the world of participatory medicine: it’s AMAZING how much information people can absorb when their lives depend on it.” What exactly does “e” mean you might be asking? Patterns of “e” mean empowered, engaged, equipped and enabled. But empowered to what end? Engaged for whom? Equipped with what resources? Enabled to do what? [...]

]]> By: e-Patient Dave http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html/comment-page-1#comment-13006 e-Patient Dave Thu, 26 Mar 2009 15:50:08 +0000 http://e-patients.net/?p=1648#comment-13006 Thanks for the clarification, Judy. My bottom line, generally, is that I want everyone to be as fully informed as possible, and empowered. Lord knows you're there. :–) Thanks for the clarification, Judy.

My bottom line, generally, is that I want everyone to be as fully informed as possible, and empowered. Lord knows you’re there. :–)

]]> By: Judy Feder http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html/comment-page-1#comment-13004 Judy Feder Thu, 26 Mar 2009 15:42:32 +0000 http://e-patients.net/?p=1648#comment-13004 I think you are mixing apples and oranges a bit. I was never on a clinical trial. My comments refer to attitudes toward approved therapies. And the question has never been if MSK doctors were not paying attention to something that might have endangered me. Quite the contrary -- they have such strict guidelines about changing TX's when there is any progression because they don't want to take any chances. Chances, however, are sometimes exactly what needs to be taken. That's what my onc has the freedom to do, as well as those oncs who have used the procedures i learned about on BCMets. I think you are mixing apples and oranges a bit. I was never on a clinical trial. My comments refer to attitudes toward approved therapies. And the question has never been if MSK doctors were not paying attention to something that might have endangered me. Quite the contrary — they have such strict guidelines about changing TX’s when there is any progression because they don’t want to take any chances. Chances, however, are sometimes exactly what needs to be taken. That’s what my onc has the freedom to do, as well as those oncs who have used the procedures i learned about on BCMets.

]]> By: SusannahFox http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html/comment-page-1#comment-50012 SusannahFox Thu, 26 Mar 2009 14:49:52 +0000 http://e-patients.net/?p=1648#comment-50012 <span class="topsy_trackback_comment"><span class="topsy_twitter_username"><span class="topsy_trackback_content">RT @ePatientDave Great comment by e-patient Judy Feder about open source EMRs! http://is.gd/p4xk (Her awesome e-story http://is.gd/oOvd)</span></span> RT @ePatientDave Great comment by e-patient Judy Feder about open source EMRs! http://is.gd/p4xk (Her awesome e-story http://is.gd/oOvd)

]]> By: e-Patient Dave http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html/comment-page-1#comment-12987 e-Patient Dave Thu, 26 Mar 2009 14:30:58 +0000 http://e-patients.net/?p=1648#comment-12987 Huh: I don't know about "follow protocols very strictly." My team was *always* ready to stop something if the pt seemed to be endangered. I'd think it'd be a grave ethics violation not to do so. I say that with some concern in my voice, because on my ACOR community it's not rare for people to say that they feel they were talked into a treatment (specifically at MSKC) because they needed people for a trial, even though it might not have been the best treatment available. And I haven't heard that concern expressed about any other institution. I wonder what's going on. In my patient-centered humanistic do-no-harm world, the patient's well-being comes WAY before "successful" completion of a clinical trial at all costs. Huh: I don’t know about “follow protocols very strictly.” My team was *always* ready to stop something if the pt seemed to be endangered. I’d think it’d be a grave ethics violation not to do so.

I say that with some concern in my voice, because on my ACOR community it’s not rare for people to say that they feel they were talked into a treatment (specifically at MSKC) because they needed people for a trial, even though it might not have been the best treatment available. And I haven’t heard that concern expressed about any other institution.

I wonder what’s going on. In my patient-centered humanistic do-no-harm world, the patient’s well-being comes WAY before “successful” completion of a clinical trial at all costs.

]]> By: Judy Feder http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html/comment-page-1#comment-12985 Judy Feder Thu, 26 Mar 2009 14:13:48 +0000 http://e-patients.net/?p=1648#comment-12985 As a research institution, they follow protocols very strictly. For example, I was on an oral chemo called Xeloda for about 2.5 years. That's because Dr. Sadan, my primary onc, refused to give up on it even when I had mild progression. We changed up the dosage, added Avastin, and squeezed every drop of utility from that drug. Had my primary onc been at MSK, I would have been required to switch therapies as soon as I showed any progression. As a research institution, they follow protocols very strictly. For example, I was on an oral chemo called Xeloda for about 2.5 years. That’s because Dr. Sadan, my primary onc, refused to give up on it even when I had mild progression. We changed up the dosage, added Avastin, and squeezed every drop of utility from that drug. Had my primary onc been at MSK, I would have been required to switch therapies as soon as I showed any progression.

]]> By: e-Patient Dave http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html/comment-page-1#comment-12972 e-Patient Dave Thu, 26 Mar 2009 13:05:10 +0000 http://e-patients.net/?p=1648#comment-12972 When you say MSK is "by the book" what do you mean? When you say MSK is “by the book” what do you mean?

]]> By: Judy Feder http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html/comment-page-1#comment-12971 Judy Feder Thu, 26 Mar 2009 13:01:50 +0000 http://e-patients.net/?p=1648#comment-12971 Dave, your "e-spottings" are right on. As is your comment about the level of knowledge that e-patients demonstrate. That is another key "e" point. I certainly sympathize with my onc, whose name is Dr. Sara Sadan, by the way, when she tells me about patients bringing in pounds of print outs that are not relevant to their situation. I also respect that fact that, when I do bring in new information, I better back it up with whatever literature IS out there. As miraculous as Herceptin has been for me, it's not candy, and she was not about to prescribe it without being confident. Another interesting dynamic: I get second opinions at Memorial Sloan Kettering (MSK). I have great respect for them, but as a research institution, they are absolutely by the book. However, one of the docs who has researched the Her2 blood test is Cliff Hudis, a BC expert there. The fact that he is interested in this, and that my situation had gotten so "dramatic" led my second opinion onc to be very supportive of the Herceptin path (although she herself would probably not have been able to prescribe it to me!) Dave, your “e-spottings” are right on. As is your comment about the level of knowledge that e-patients demonstrate. That is another key “e” point. I certainly sympathize with my onc, whose name is Dr. Sara Sadan, by the way, when she tells me about patients bringing in pounds of print outs that are not relevant to their situation. I also respect that fact that, when I do bring in new information, I better back it up with whatever literature IS out there. As miraculous as Herceptin has been for me, it’s not candy, and she was not about to prescribe it without being confident. Another interesting dynamic: I get second opinions at Memorial Sloan Kettering (MSK). I have great respect for them, but as a research institution, they are absolutely by the book. However, one of the docs who has researched the Her2 blood test is Cliff Hudis, a BC expert there. The fact that he is interested in this, and that my situation had gotten so “dramatic” led my second opinion onc to be very supportive of the Herceptin path (although she herself would probably not have been able to prescribe it to me!)

]]> By: e-Patient Dave http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html/comment-page-1#comment-12856 e-Patient Dave Thu, 26 Mar 2009 00:21:54 +0000 http://e-patients.net/?p=1648#comment-12856 btw, this is a good time to review <a href="http://e-patients.net/archives/2008/07/steal-these-slides.html" target="epd" rel="nofollow">Steal These Slides</a>, the graphics created in 1995 by our visionary founder Tom Ferguson. That was just months after the birth of Mosaic, the browser that made the Web take off. Can you imagine that he foresaw this day? btw, this is a good time to review Steal These Slides, the graphics created in 1995 by our visionary founder Tom Ferguson. That was just months after the birth of Mosaic, the browser that made the Web take off. Can you imagine that he foresaw this day?

]]> By: e-Patient Dave http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html/comment-page-1#comment-12855 e-Patient Dave Thu, 26 Mar 2009 00:21:30 +0000 http://e-patients.net/?p=1648#comment-12855 What can we teach people from this story – people who are new to "e"?<p/> I spy, with my little eye, these patterns of "e" – empowered, engaged, equipped and enabled: <ul><li><b>Judy did not stop at what her providers were able to provide.</b> She likes her providers, they care about her, and she collaborates with them; but nothing would stop this empowered patient from being engaged in her care, from continuously seeking more and more information.</li><li><b>Her oncologist collaborated with her and welcomed the contribution.</b> This exemplifies the new model of participatory medicine.</li><li><b>New information arose that changed the game – from within a patient community.</b> We talk here about the "lethal lag time," the time between when new information comes to be, and the time when it's in doctors' hands. <i>People die during that latency period</i> – and patient communities can help, because they're <i>focused</i> on one disease and can hear about information before it's made it through the publication pipeline.</li></ul><p/>Judy's story makes it clearer than ever that the world no longer consists of a top-down structure in which information arises from a concentrated central structure and gets disseminated to us. Today, information is everywhere, and we can often find it at least as easily as anyone else.<p/>Can you spot anything else? <p/> What can we teach people from this story – people who are new to “e”?

I spy, with my little eye, these patterns of “e” – empowered, engaged, equipped and enabled:

  • Judy did not stop at what her providers were able to provide. She likes her providers, they care about her, and she collaborates with them; but nothing would stop this empowered patient from being engaged in her care, from continuously seeking more and more information.
  • Her oncologist collaborated with her and welcomed the contribution. This exemplifies the new model of participatory medicine.
  • New information arose that changed the game – from within a patient community. We talk here about the “lethal lag time,” the time between when new information comes to be, and the time when it’s in doctors’ hands. People die during that latency period – and patient communities can help, because they’re focused on one disease and can hear about information before it’s made it through the publication pipeline.

Judy’s story makes it clearer than ever that the world no longer consists of a top-down structure in which information arises from a concentrated central structure and gets disseminated to us. Today, information is everywhere, and we can often find it at least as easily as anyone else.

Can you spot anything else?

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