Tweet chat #hpm 2010 28 07

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Transcript of Tweetchat for #hpm covering hospice and palliative medicine issues. Posted in reverse chronological order.

Transcript of Tweetchat for #hpm covering hospice and palliative medicine issues. Posted in reverse chronological order.

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  • 1. TweetChat - #hpm http://tweetchat.com/room/hpm TweetChat # Go » Add a Ustream video feed. Ustream channel URL: a_singledrop RT @MeredithGould: We have so much trouble telling the truth about life, how can we expect openness & honesty about death? #hpm -9:28 PM Jul 28th, 2010 pHealth RT @hcsmSV: RT @DrDavidBallard: Q&A: Mayo Clinic’s New Center for Social Media (@WSJ Health Blog) http://bit.ly/d4O3Tz #health #healthcare #hcsm #hpm -9:26 PM Jul 28th, 2010 hcsmSV RT @Y_A_H_A: "What Do You Do Today To Get Ready For Tomorrow?" @AIDSgov talks about Young Adults http://ow.ly/2hSHY #hpm -9:20 PM Jul 28th, 2010 hcsmSV RT @klxmedia: RT @mashsocialmedia: How Social Media Can Make Us More Productive http://ow.ly/2i0r0 #hpm -9:18 PM Jul 28th, 2010 erinwarde RT @MeredithGould: We have so much trouble telling the truth about life, how can we expect openness & honesty about death? #hpm -9:18 PM Jul 28th, 2010 hcsmSV RT @renee_berry: Healthcare and Social Media: Bringing the Focus Back to the Patient http://bit.ly/b4O6H0 via @a_signledrop #hpm -9:18 PM Jul 28th, 2010 revdoc Goodnight, all! Chat with you next week #hpm -9:14 PM Jul 28th, 2010 healthtap RT @hcsmSV: RT @DrDavidBallard: Q&A: Mayo Clinic’s New Center for Social Media (@WSJ Health Blog) http://bit.ly/d4O3Tz #health #healthcare #hcsm #hpm -9:14 PM Jul 28th, 2010 revdoc @renee_berry Perfect shirt for Christian! #hpm -9:12 PM Jul 28th, 2010 crgonzalez @MeredithGould LOL (perfect Old Spice riff) #hpm -9:09 PM Jul 28th, 2010 renee_berry RT @sharingstrength: RT @ctsinclair: Same time next week for #HPM tweetchat. Wednesday 9 Eastern, 6 Pacific. Any offers to host?' #hpm -9:09 PM Jul 28th, 2010 MeredithGould @renee_berry And I guess clutching at your throat and staggering wouldn't be professional, eh? #hpm -9:08 PM Jul 28th, 2010 1 of 20 7/28/2010 10:04 PM
  • 2. TweetChat - #hpm http://tweetchat.com/room/hpm MeredithGould @ctsinclair Go for it. "Look at that dead body, now look at mine"... #hpm -9:08 PM Jul 28th, 2010 renee_berry @MeredithGould right?! yes expired, I visibly cringed every time I heard it. tried to find professional ways of verbalizing my concerns #hpm -9:07 PM Jul 28th, 2010 revdoc @crgonzalez What a long strange trip it's been... #hpm -9:06 PM Jul 28th, 2010 sharingstrength Thank you everyone for contributing to my #hpm continuing ed. I'm on holidays and won't be joining you for a couple of weeks. -9:06 PM Jul 28th, 2010 MeredithGould We have so much trouble telling the truth about life, how can we expect openness & honesty about death? #hpm -9:06 PM Jul 28th, 2010 renee_berry @ctsinclair @revdoc @MeridithGould Or put this T on http://ow.ly /2i5b4 #hpm -9:06 PM Jul 28th, 2010 crgonzalez @MeredithGould "Dead" could work, but you need some Grateful Dead band members to endorse it ala "I'm a Dead Head" #hpm -9:05 PM Jul 28th, 2010 revdoc RT @MeredithGould: @renee_berry "Expired"...like milk? Agree. Dead is dead. Not passed, not expired. #hpm -9:05 PM Jul 28th, 2010 sharingstrength True enough. But @ctsinclair started it. RT @MeredithGould: @sharingstrength "Viral" like that's not a scary word! #hpm -9:04 PM Jul 28th, 2010 MeredithGould @renee_berry "Expired"...like milk? #hpm -9:04 PM Jul 28th, 2010 MeredithGould @renee_berry I'm fond of "dead" but don't generally get a lot of support for that word. #hpm -9:03 PM Jul 28th, 2010 revdoc Maybe the Old Spice guy would do it! Christian, keep your shirt on. #hpm -9:03 PM Jul 28th, 2010 sharingstrength RT @ctsinclair: Same time next week for #HPM tweetchat. Wednesday 9 Eastern, 6 Pacific. Any offers to host?' #hpm -9:03 PM Jul 28th, 2010 tymeyer @SheyontheBay Thanks all, enjoyed the chat! #hpm -9:03 PM Jul 28th, 2010 MeredithGould @ctsinclair Get spray painted. #hpm -9:03 PM Jul 28th, 2010 renee_berry @MeredithGould how about using the word 'expired?' ...terrible I know but I've heard it far too often! #hpm -9:03 PM Jul 28th, 2010 2 of 20 7/28/2010 10:04 PM
  • 3. TweetChat - #hpm http://tweetchat.com/room/hpm ctsinclair Good night all! #hpm -9:03 PM Jul 28th, 2010 ctsinclair Of course we would need to hire an actor with better abs than mine! #hpm -9:03 PM Jul 28th, 2010 sharingstrength Enjoy! RT @SheyontheBay: Good luck to @tymeyer and wife!! Mazel tov! #hpm -9:02 PM Jul 28th, 2010 MeredithGould @sharingstrength "Viral" like that's not a scary word! #hpm -9:02 PM Jul 28th, 2010 ctsinclair I so want to do an @OldSpice parody for hospice and palliative care #hpm -9:02 PM Jul 28th, 2010 ctsinclair RT @SheyontheBay: Good luck to @tymeyer and wife!! Mazel tov! 'Yes please let us know!' #hpm -9:01 PM Jul 28th, 2010 sharingstrength RT @ctsinclair: @crgonzalez Groovy care - Love it! #hpm //you'd have a better chance at going viral :-)) -9:01 PM Jul 28th, 2010 ctsinclair RT @hollyby: @ctsinclair Same time next week for #HPM tweetchat? Wednesday 9 Eastern, 6 Pacific? 'YUP! Any offers to host?' #hpm -9:01 PM Jul 28th, 2010 SheyontheBay Good luck to @tymeyer and wife!! Mazel tov! #hpm -9:01 PM Jul 28th, 2010 MeredithGould RT @ctsinclair: @MeredithGould We need a cultural revolution in attitudes towards death and by extension life//Let's do it! #hpm -9:01 PM Jul 28th, 2010 revdoc @SheyontheBay OOOoooo. I like it! #hpm -9:01 PM Jul 28th, 2010 MeredithGould @renee_berry I know and I obviously agree. "Passed" just doesn't quite capture the corporeal reality. #hpm -9:00 PM Jul 28th, 2010 ctsinclair @JDRFQUEEN We are almost done! Hang in there! #hpm -9:00 PM Jul 28th, 2010 sharingstrength @MeredithGould True. Not being able to use the word dying makes SEO of #hpm websites nearly impossible too. -9:00 PM Jul 28th, 2010 revdoc @ctsinclair Miss the LIVE show? Crazy talk! #hpm -9:00 PM Jul 28th, 2010 renee_berry RT @SheyontheBay: @revdoc I'm still thinkin' mandatory EOL education for license renewal!! Like infection control and child abuse here in NY! #hpm -9:00 PM Jul 28th, 2010 3 of 20 7/28/2010 10:04 PM
  • 4. TweetChat - #hpm http://tweetchat.com/room/hpm hollyby @ctsinclair Same time next week for #HPM tweetchat? Wednesday 9 Eastern, 6 Pacific? #hpm -9:00 PM Jul 28th, 2010 ctsinclair @MeredithGould We need a cultural revolution in attitudes towards death and by extension life #hpm -9:00 PM Jul 28th, 2010 JDRFQUEEN need to filter out my #hpm from my #dsma you have no idea how weird my twitter stream looks right now! -9:00 PM Jul 28th, 2010 SheyontheBay @revdoc I'm still thinkin' mandatory EOL education for license renewal!! Like infection control and child abuse here in NY! #hpm -9:00 PM Jul 28th, 2010 revdoc @ctsinclair Yep--last week I nearly blew a neuron! #hpm -9:00 PM Jul 28th, 2010 renee_berry @MeredithGould I think word like dying are not what people want to hear but it is what they need to hear. #hpm -8:59 PM Jul 28th, 2010 ctsinclair @crgonzalez Groovy care - Love it! #hpm -8:59 PM Jul 28th, 2010 revdoc @SheyontheBay Most docs won't think about this until someone has been in hosp many, many, many times and crashed beyond repair #hpm -8:59 PM Jul 28th, 2010 sharingstrength RT @ctsinclair: [Twitter Tip] when referring to the Gawande article include @NewYorker maybe they will take notice? #hpm -8:59 PM Jul 28th, 2010 ctsinclair @revdoc DVR? Tweet during commercials? This was a bit of a slower pace tonight, which probably helped! #hpm -8:59 PM Jul 28th, 2010 tymeyer RT @SheyontheBay: @revdoc Yes, during their FINAL hospital admission...dont most have mult. hosp admits during the disease trajectory? #hpm -8:58 PM Jul 28th, 2010 MeredithGould @revdoc LOL. And I was in the throes of resolving an identity theft situation that has been going on for days!! #hpm -8:58 PM Jul 28th, 2010 crgonzalez Quality of Life Care? (too sterile) Groovy Care? (just kidding) Temporal Care? (too new age) ...where's the Madison Avenue ad geniuses? #hpm -8:58 PM Jul 28th, 2010 MeredithGould Is there any easy but accurate language to substitute for "hospice"? How could there be when we can't even use words like "dying." #hpm -8:58 PM Jul 28th, 2010 revdoc This would be SO much easier if I were not trying to watch So You Think You Can Dance at the same time! #hpm -8:58 PM Jul 28th, 2010 hollyby RT @revdoc: We need to show the stats on how pts live longer, have < $, > 4 of 20 7/28/2010 10:04 PM
  • 5. TweetChat - #hpm http://tweetchat.com/room/hpm satisfaction, less PTSD for families. '< CG morbidity too!' #hpm -8:58 PM Jul 28th, 2010 ctsinclair OK another great Tweetchat! Wrapping up, please leave us with your last thoughts for the night! #hpm -8:57 PM Jul 28th, 2010 SheyontheBay @revdoc Yes, during their FINAL hospital admission...don't most have multiple hospital admissions during the disease trajectory? #hpm -8:57 PM Jul 28th, 2010 sharingstrength RT @ctsinclair: Would love for something viral like @GirlEffect for hospice and palliative medicine. http://www.girleffect.org/ #hpm -8:57 PM Jul 28th, 2010 ctsinclair [Twitter Tip] when referring to the Gawande article include @NewYorker maybe they will take notice? #hpm -8:57 PM Jul 28th, 2010 sharingstrength I see, but this wouldn't be used with the patient/family right? RT @ctsinclair: @Sheyonthebay ...we use 'come on to hospice services' #hpm -8:56 PM Jul 28th, 2010 SheyontheBay Apples and oranges: referring docs and pts/families. Consider the WIFM factor: what's in it for me? #hpm -8:56 PM Jul 28th, 2010 inhousehospice RT @hollyby: We need to help people know that people can live longer on hospice than without it. Nice that Gawande mentioned it too. #hpm -8:56 PM Jul 28th, 2010 ctsinclair RT @SheyontheBay: first person to introduce MUST be trained/hpm savvy. 'A dream for sure. Some make our job way easier, some harder.' #hpm -8:56 PM Jul 28th, 2010 revdoc @SheyontheBay Still often too late. We see a lot of hospital to inpt hospice #hpm -8:56 PM Jul 28th, 2010 ctsinclair RT @revdoc: We need to show cardio, pulm, onc the stats on how pts live longer, have lower $, more satisfaction, less PTSD for families #hpm -8:55 PM Jul 28th, 2010 hollyby @SheyontheBay We need to help people know that people can live longer on hospice than without it. Nice that Gawande mentioned it too. #hpm -8:55 PM Jul 28th, 2010 SheyontheBay first person to introduce MUST be trained/hpm savvy. Mandatory palliative consults in hospital to start? #hpm -8:55 PM Jul 28th, 2010 revdoc We need to show cardio, pulm, onc the stats on how pts live longer, have lower costs, more satisfaction, less PTSD for families #hpm -8:55 PM Jul 28th, 2010 ctsinclair @sharingstrength @Sheyonthebay - Locally we use 'come on to hospice services' may extend from 'coming on the Medicare Benefit' #hpm -8:54 PM Jul 28th, 2010 5 of 20 7/28/2010 10:04 PM
  • 6. TweetChat - #hpm http://tweetchat.com/room/hpm tymeyer @sharingstrength Right, I use support for patients/families who aren't necessarily aware of prior use of "supportive" in onc circles #hpm -8:54 PM Jul 28th, 2010 SheyontheBay @ctsinclair Yup, once we get past the word. Some shut down as soon as the word is mentioned. As in, "thehospice nurse is here..." First #hpm -8:54 PM Jul 28th, 2010 ctsinclair RT @revdoc: Emphasis on upstream palliative care so we are not so scary when people come near end of life--we continue what we do best #hpm -8:53 PM Jul 28th, 2010 renee_berry RT @revdoc: Emphasis on upstream palliative care so that we are not so scary when people come to the end of life--we just continue what we do best #hpm -8:53 PM Jul 28th, 2010 sharingstrength @SheyontheBay Is this phrase commonly used to "come on hospice"? As in go on a treatment? interesting. #hpm -8:53 PM Jul 28th, 2010 ctsinclair Would love for something viral like @GirlEffect for hospice and palliative medicine. http://www.girleffect.org/ #hpm -8:53 PM Jul 28th, 2010 revdoc Emphasis on upstream palliative care so that we are not so scary when people come to the end of life--we just continue what we do best #hpm -8:52 PM Jul 28th, 2010 sharingstrength @tymeyer I suspect your use of supportive would only be confusing to those who have encountered it used for symptom management prior to #hpm -8:52 PM Jul 28th, 2010 ctsinclair @SheyontheBay ...to say, let's try to give the full benefit of hospice and get the most time we can with the help. #hpm -8:51 PM Jul 28th, 2010 SheyontheBay @hollyby As long as the perception is "They came on hospice and were dead within a week" we need time for a new paradigm #hpm -8:50 PM Jul 28th, 2010 ctsinclair @SheyontheBay I flip the hospice = death within days/weeks meme to say, it is actually true, b/c of cultural avoidance. then I go on... #hpm -8:50 PM Jul 28th, 2010 tymeyer @hollyby That has been our conversation and reason we haven't changed names yet #hpm -8:50 PM Jul 28th, 2010 sharingstrength RT @ctsinclair: It is very possible whatever we change the name to is likely to be stigmatized. #hpm / i dare say likely. -8:50 PM Jul 28th, 2010 renee_berry RT @hollyby: I wonder if we all abandoned the names "hospice" or "palliative" how quickly "supportive care" would become the new feared words. #hpm -8:50 PM Jul 28th, 2010 6 of 20 7/28/2010 10:04 PM
  • 7. TweetChat - #hpm http://tweetchat.com/room/hpm inhousehospice @SheyontheBay It's the truth! So many families believes hospice=last days.. That's why it's become the "h-word".. #hpm -8:49 PM Jul 28th, 2010 sharingstrength @ctsinclair @tymeyer interesting how you use opposite words to acheive same goal: comfort to patient and family #hpm -8:49 PM Jul 28th, 2010 ctsinclair @hollyby: And people might even use air quotes around the word 'support' for sarcasm/doubt #hpm -8:49 PM Jul 28th, 2010 SheyontheBay @ctsinclair But people have been ingrained to associate"hospice" with death - within days/weeks! Even had docs saying it to me #hpm -8:49 PM Jul 28th, 2010 revdoc RT @SheyontheBay: We need a good word, invoking the science of medicine with the goals of living well. Agreed! #hpm -8:48 PM Jul 28th, 2010 inhousehospice RT @ctsinclair: It is very possible whatever we change the name to is likely to be stigmatized. "very true." #hpm -8:48 PM Jul 28th, 2010 hollyby I wonder if we all abandoned the names "hospice" or "palliative" how quickly "supportive care" would become the new feared words. #hpm -8:48 PM Jul 28th, 2010 SheyontheBay @ctsinclair Me too. We need a good word, invoking the science of medicine with the goals of living well. Brainstorm? #hpm -8:47 PM Jul 28th, 2010 ctsinclair It is very possible whatever we change the name to is likely to be stigmatized. #hpm -8:47 PM Jul 28th, 2010 renee_berry RT @hollyby Branding is important. Both run the risk= "do nothing" or only hospice instead of upstream concurrent care Education is key #hpm -8:47 PM Jul 28th, 2010 revdoc Spoonful of sugar strategy? I just don't want to "trick" people into something by calling a rose by any other name #hpm -8:47 PM Jul 28th, 2010 tymeyer RT True but helps with desciption for me @sharingstrength: T3: But supportive care is not necessarily the equivalent of palliative care #hpm -8:47 PM Jul 28th, 2010 ctsinclair I actually use the mystery surrounding 'palliative' to allow me to tailor my definition to what the patients immediate needs are. #hpm -8:46 PM Jul 28th, 2010 sharingstrength RT @crgonzalez: @ctsinclair reading your article, stunned by how many ppl claimed term palliative care caused them distress! #hpm /me too -8:46 PM Jul 28th, 2010 hollyby T3: Branding is important. Both run the risk = "do nothing" or only hospice instead of upstream concurrent care. Education is key. #hpm -8:46 PM Jul 28th, 2010 7 of 20 7/28/2010 10:04 PM
  • 8. TweetChat - #hpm http://tweetchat.com/room/hpm ctsinclair Oncologists typically use the word 'supportive' care, and peers see increase in consults when name changed to 'supportive' #hpm -8:45 PM Jul 28th, 2010 crgonzalez @ctsinclair Wow. In reading your article I'm stunned by how many respondents claimed the term palliative care caused them distress! #hpm -8:45 PM Jul 28th, 2010 tymeyer Supportive in that we will help discuss issues as they arrive, help you be more comfortable and will keep fam up to date #hpm -8:45 PM Jul 28th, 2010 ctsinclair @SheyontheBay I am proud of 'hospice' and 'palliative' but if a barrier to getting more good care to ppl, I (think) I can get over it #hpm -8:44 PM Jul 28th, 2010 sharingstrength RT @ctsinclair: For more background reading on Supportive Care v Palliative Care see @Pallimed 2009 post http://bit.ly/idXIc #hpm -8:44 PM Jul 28th, 2010 sharingstrength T3: But supportive care is not necessarily the equivalent of palliative care. #hpm -8:44 PM Jul 28th, 2010 SheyontheBay I'm proud of "hospice" but the word itself is an incredible obstacle #hpm -8:43 PM Jul 28th, 2010 ctsinclair RT @tymeyer: Actually use "supportive care" when describing "palliative care" "I do as well.' #hpm -8:43 PM Jul 28th, 2010 sharingstrength Like this topic. RT @ctsinclair: Topic #3: Palliative Care/Medicine vs. Supportive Care? Does the name really make a difference? #hpm -8:43 PM Jul 28th, 2010 revdoc "Supportive care" to me sounds more like our field is not grounded in good medicine/science? Sounds like a "soft" care? #hpm -8:43 PM Jul 28th, 2010 ctsinclair For more background reading on Supportive Care v Palliative Care see @Pallimed 2009 post http://bit.ly/idXIc #hpm -8:42 PM Jul 28th, 2010 sharingstrength Mentors are vital in peer support forums RT @ctsinclair: RT @crgonzalez: Having a buddy system makes #hpm approachable. #hpm -8:42 PM Jul 28th, 2010 tymeyer Actually use "supportive care" when describing "palliative care" #hpm -8:42 PM Jul 28th, 2010 crgonzalez T3: This is where health literacy kicks in. A lot people don't know the meaning of the word palliative #hpm -8:41 PM Jul 28th, 2010 ctsinclair @crgonzalez Insurance companies have used Case managers with more palliative care knowledge to check in on pts w/ chronic dz #hpm -8:41 PM Jul 28th, 2010 8 of 20 7/28/2010 10:04 PM
  • 9. TweetChat - #hpm http://tweetchat.com/room/hpm sharingstrength Thanks everyone for the input on topic 2 #hpm -8:41 PM Jul 28th, 2010 sharingstrength RT @hollyby: use in bereavement, especially of teen and tweens. It would be a good combo of tech and peer group. #hpm -8:40 PM Jul 28th, 2010 crgonzalez @ctsinclair Exactly. #hpm -8:40 PM Jul 28th, 2010 ctsinclair Topic #3: Palliative Care/Medicine vs. Supportive Care? Does the name really make a difference? #hpm -8:40 PM Jul 28th, 2010 renee_berry RT @revdoc: Look at some of the tribute pages on FB--it is not just the kids posting in bereavement. I agree #hpm -8:39 PM Jul 28th, 2010 ctsinclair RT @crgonzalez: Having a buddy system makes #hpm approachable. 'like breast CA navigators?' #hpm -8:39 PM Jul 28th, 2010 tymeyer RT I like that. @hollyby: Could be interesting to use in bereavement, especially of teen and tweens. #hpm -8:39 PM Jul 28th, 2010 SheyontheBay http://dev.mycarecommunity.com/ - sustained by large insurance company #hpm -8:39 PM Jul 28th, 2010 ctsinclair Getting ready to move to Topic #3..... #hpm -8:38 PM Jul 28th, 2010 revdoc Look at some of the tribute pages on FB--it is not just the kids posting in bereavement. (I have posted on pages of deceased friends) #hpm -8:38 PM Jul 28th, 2010 crgonzalez @ctsinclair Having a buddy system makes hospice and palliative care approachable. I'd like a "Palliative Pal" from HC pros to get info #hpm -8:38 PM Jul 28th, 2010 hollyby Could be interesting to use in bereavement, especially of teen and tweens. It would be a good combo of tech and peer group. #hpm -8:37 PM Jul 28th, 2010 revdoc @ctsinclair Agreed. There is a lot of crap on the web #hpm -8:37 PM Jul 28th, 2010 ctsinclair What about putting out good material on various SM platforms with ability to comment/share and you get a virtual/open community? #hpm -8:37 PM Jul 28th, 2010 ctsinclair RT @revdoc: Would we run the risk of creating another "junk information" anecdotal forum? 'Would need heavy moderation = time = $' #hpm -8:36 PM Jul 28th, 2010 renee_berry RT @hollyby RT @crgonzalez I like what CaringBridge does allowing patients &family to connect loved ones with their own SM hub Agreed! #hpm -8:36 PM Jul 28th, 2010 9 of 20 7/28/2010 10:04 PM
  • 10. TweetChat - #hpm http://tweetchat.com/room/hpm sharingstrength RT @ctsinclair: forming online comm. in #hpm requires trusting others w/ potentially intense issues, tough to build trust in short time #hpm -8:36 PM Jul 28th, 2010 revdoc Would we run the risk of creating another "junk information" anecdotal forum? #hpm -8:36 PM Jul 28th, 2010 hollyby RT @crgonzalez: I like what CaringBridge does in allowing patients & family to connect loved ones with their own SM hub. 'Agreed!' #hpm -8:35 PM Jul 28th, 2010 ctsinclair Have imagined it would be nice to see a hospice have online forums, where family members could use each other for support. Examples? #hpm -8:35 PM Jul 28th, 2010 renee_berry @revdoc bring palliative care into popular culture #hpm -8:35 PM Jul 28th, 2010 sharingstrength Yes RT @crgonzalez: I like what CaringBridge does in allowing patients & family to connect loved ones with their own SM hub. #hpm -8:34 PM Jul 28th, 2010 revdoc @crgonzalez Love Caring Bridge #hpm -8:34 PM Jul 28th, 2010 sharingstrength RT @ctsinclair: need to reach out to family members who are looking for help. Kind of augmenting the 24/7 on-call nurse availability #hpm -8:34 PM Jul 28th, 2010 ctsinclair Although many a patient has told me it is easier to talk abt some of the most difficult things to a stranger compared to familiar face #hpm -8:34 PM Jul 28th, 2010 hollyby Online or otherwise communities of people receiving #HPM services will come down to marketing it correctly and providing useful info #hpm -8:34 PM Jul 28th, 2010 revdoc "Palliative care" ed would be more palatable to wider community--but could increase knowledge that there "is something we can do" #hpm -8:34 PM Jul 28th, 2010 SheyontheBay Focus on: 'It's about how you live' not the dreaded H-word #hpm -8:33 PM Jul 28th, 2010 sharingstrength @ctsinclair HTN meds? #hpm -8:33 PM Jul 28th, 2010 ctsinclair And forming an online community in #hpm requires trusting others with potentially intense issues, tough to build trust in short time #hpm -8:33 PM Jul 28th, 2010 crgonzalez @sharingstrength I like what CaringBridge does in allowing patients & family to connect loved ones with their own SM hub. #hpm -8:33 PM Jul 28th, 2010 sharingstrength And sustaining. RT @MeredithGould: @sharingstrength So the question is how to building communities among those folks? #hpm -8:33 PM Jul 28th, 2010 10 of 20 7/28/2010 10:04 PM
  • 11. TweetChat - #hpm http://tweetchat.com/room/hpm hollyby Many people don't want to focus on the #HPM experience, b/c often it is still about fighting XYZ disease & trying to feel normal #hpm -8:32 PM Jul 28th, 2010 sharingstrength I would like to discuss the particular challenges of sustaining an online peer support community in #hpm -8:32 PM Jul 28th, 2010 ctsinclair RT @revdoc: How your heart works vs how you die carry diff levels of emotional overlay-careful with tone w/o face to go w/ explan #hpm -8:32 PM Jul 28th, 2010 SheyontheBay reach out to tech-savvy 30/40yr olds,may be searching 4 info 4 their parents needs. #hpm -8:32 PM Jul 28th, 2010 revdoc Trying 2 explain mechanics of dying could come across very cold if we just put up "technical" stuff or gooshy if we stray too emotional #hpm -8:32 PM Jul 28th, 2010 sharingstrength The challenges of getting ppl to participate online are common not matter what disease type or state (managing or palliative) #hpm -8:31 PM Jul 28th, 2010 ctsinclair I think we need to be reaching out to family members who are looking for help. Kind of augmenting the 24/7 on-call nurse availability #hpm -8:31 PM Jul 28th, 2010 revdoc How your heart works vs how you die carry different levels of emotional overlay--need to be careful with tone w/o face to go w/ explan #hpm -8:31 PM Jul 28th, 2010 ctsinclair @sharingstrength Well when talking about using SM to educate patients about HTN meds, it is about a chronic dz management #hpm -8:30 PM Jul 28th, 2010 renee_berry RT @ctsinclair @revdoc I think the age barrier to tech is a surrogate4 openess 2new experiences/curiosity which varies w/any age cohort #hpm -8:30 PM Jul 28th, 2010 ctsinclair RT @MeredithGould: So the question is how to building communities among pt/family? 'Maybe a good role for volunteers?' #hpm -8:29 PM Jul 28th, 2010 sharingstrength For sure. RT @MeredithGould: @sharingstrength Maybe the "peers" are the caregivers/family members? #hpm -8:29 PM Jul 28th, 2010 revdoc Yep--Skype may be next on Mom's list with grandchildren off to college #hpm -8:29 PM Jul 28th, 2010 sharingstrength Can u explain the differences? RT @ctsinclair: When I hear other specialties talk about pt education & sm, doesn't seem to fit for #hpm -8:29 PM Jul 28th, 2010 crgonzalez RT @MeredithGould @revdoc Boomers & older are generally introduced to and become engaged by social media b/c of grandkids. #hpm -8:29 PM Jul 28th, 2010 11 of 20 7/28/2010 10:04 PM
  • 12. TweetChat - #hpm http://tweetchat.com/room/hpm ctsinclair @revdoc I think the 'age barrier to tech' is a surrogate for 'openess to new experiences/curiosity' which varies w/ any age cohort #hpm -8:29 PM Jul 28th, 2010 MeredithGould @sharingstrength So the question is how to building communities among those folks? #hpm -8:28 PM Jul 28th, 2010 MeredithGould @revdoc And we're discovering that boomers & older are generally introduced to and become engaged by social media b/c of grandkids. #hpm -8:28 PM Jul 28th, 2010 ctsinclair Searching for info about #hpm versus entering into communities and participating are two very different ways to use the web #hpm -8:28 PM Jul 28th, 2010 sharingstrength @SheyontheBay my query was focused on the patient/family audience #hpm -8:27 PM Jul 28th, 2010 revdoc We could do pain and other sx mgmt ed virtually #hpm -8:27 PM Jul 28th, 2010 sharingstrength RT @SheyontheBay: challenges: two-fold target market: providers and patients/families - different needs, different usage #hpm -8:27 PM Jul 28th, 2010 revdoc Of course, that is a gross generalization because I know folks of all ages who do or do not embrace tech #hpm -8:26 PM Jul 28th, 2010 hollyby T2: Getting those that are internet savvy to the online community, difficult subject matter, exhausted pts and families even if willing #hpm -8:26 PM Jul 28th, 2010 sharingstrength RT @ctsinclair: I think biggest barrier to online communities is short timespan people receive hospice or palliative care services #hpm -8:26 PM Jul 28th, 2010 MeredithGould @sharingstrength Maybe the "peers" are the caregivers/family members? #hpm -8:26 PM Jul 28th, 2010 renee_berry RT @MeredithGould: Barrier: denial and resistance to end-of-life planning in advance. #hpm -8:26 PM Jul 28th, 2010 ctsinclair When I hear other specialties (Cards/Oncology/Renal) talk about patient education and social media, it doesn't seem to fit for hospice #hpm -8:26 PM Jul 28th, 2010 renee_berry @ctsinclair isn't part of that because people are not aware of palliative services till the very end? #hpm -8:26 PM Jul 28th, 2010 revdoc Certain pop. cohorts are not familiar with tech: my mother isn't on FB or Twitter- barely have her emailing. My daus won't use Twitter #hpm -8:26 PM Jul 28th, 2010 12 of 20 7/28/2010 10:04 PM
  • 13. TweetChat - #hpm http://tweetchat.com/room/hpm MeredithGould Barrier: denial and resistance to end-of-life planning in advance. #hpm -8:26 PM Jul 28th, 2010 sharingstrength maintaining an online #hpm community of peer support must be challenging given that the members are dying and internally focussed. -8:25 PM Jul 28th, 2010 SheyontheBay challenges: two-fold target market: providers and patients/families - different needs, different usage #hpm -8:25 PM Jul 28th, 2010 ctsinclair I think the biggest barrier to online communities is the short timespan people receive hospice or palliative care services #hpm -8:24 PM Jul 28th, 2010 renee_berry RT @revdoc: Fear on the part of administrations, worries about HIPPA, not tech savvy enough to feel comfortable with this new-fangled stuff #hpm -8:23 PM Jul 28th, 2010 ctsinclair @hollyby I think the story makes the article. I was talking with someone on LinkedIn Forum about how to take parts to put in brochure #hpm -8:23 PM Jul 28th, 2010 MeredithGould Faced by...? @sharingstrength Please clarify. #hpm -8:23 PM Jul 28th, 2010 revdoc Fear on the part of administrations, worries about HIPPA, not tech savvy enough to feel comfortable with this new-fangled stuff #hpm -8:23 PM Jul 28th, 2010 ctsinclair @renee_berry Gawande was Topic #1, now moving onto Topic #2 #hpm -8:22 PM Jul 28th, 2010 MeredithGould RT @ctsinclair: Topic #2: What challenges are faced in supporting online communities in hospice or palliative care? #hpm -8:22 PM Jul 28th, 2010 hollyby Maybe but people love a good story @ctsinclair: I think a abbreviated version of this article would be better for mass distribution. #hpm -8:22 PM Jul 28th, 2010 ctsinclair @sharingstrength can clarify any points on how I worded the questions. I believe she is asking more about patient/family online com, #hpm -8:22 PM Jul 28th, 2010 renee_berry @ctsinclair is this our T1? #hpm -8:21 PM Jul 28th, 2010 ctsinclair Topic #2: What challenges are faced in supporting online communities in hospice or palliative care? #hpm -8:21 PM Jul 28th, 2010 ctsinclair Moving to topic #2, a questions from @sharingstrength #hpm -8:21 PM Jul 28th, 2010 revdoc That photo was creepy, but the guy's other works are cool #hpm -8:21 PM Jul 28th, 2010 13 of 20 7/28/2010 10:04 PM
  • 14. TweetChat - #hpm http://tweetchat.com/room/hpm inhousehospice @tymeyer I agree! It's a great resource for people who don't understand what #hospice or #palliative care is/can do. #hpm -8:20 PM Jul 28th, 2010 ctsinclair RT @revdoc: American attention span not suited for items that wont fit on Twitter? 'It is getting there; smaller packets of info #hpm -8:20 PM Jul 28th, 2010 SheyontheBay RT @ctsinclair: If we have 4000 hospices with avg staff of 50 = 200000 people to help spread this article, are we doing this well? #hpm -8:20 PM Jul 28th, 2010 ctsinclair The photo for the article is from @MrToledano photo-editorial about the last days with his father with #Alz http://bit.ly/cOwEfj #hpm -8:20 PM Jul 28th, 2010 tymeyer RT Sure @ctsinclair: I think a abbreviated version of this article would be better for mass distribution #hpm -8:19 PM Jul 28th, 2010 revdoc American attention span not suited for items that won't fit on Twitter? #hpm -8:19 PM Jul 28th, 2010 ctsinclair Hey did use the word 'narcotic' instead of 'opioid' but I can let that slide. #hpm -8:18 PM Jul 28th, 2010 ctsinclair I think a abbreviated version of this article would be better for mass distribution #hpm -8:18 PM Jul 28th, 2010 tymeyer I thought it was a great view from an "outsider" to #hpm. Should really help give others a better idea of what we do. #hpm -8:18 PM Jul 28th, 2010 sharingstrength Me too. RT @MeredithGould: @ctsinclair Whew, I wondered! #hpm -8:17 PM Jul 28th, 2010 ctsinclair If we have 4000 hospices with avg staff of 50 = 200000 people to help spread this article, are we doing this well? #hpm -8:16 PM Jul 28th, 2010 revdoc RT @revdoc: Wrong article--here's the right link http://bit.ly/d6pbwg #hpm -8:16 PM Jul 28th, 2010 hollyby I told my IDG today as well. It is a great start to a conversation, and hopefully will have more people reading it after @nprfreshair #hpm -8:16 PM Jul 28th, 2010 ctsinclair I passed out the article to my palliative home health team, explained why it was important to read. #hpm -8:15 PM Jul 28th, 2010 MeredithGould RT @ctsinclair:Wrong link for earlier Gawande article, here is the hospice/palliative one: http://bit.ly/d6pbwg #hpm -8:15 PM Jul 28th, 2010 14 of 20 7/28/2010 10:04 PM
  • 15. TweetChat - #hpm http://tweetchat.com/room/hpm crgonzalez Were there examples on overused medical care that resonated with anyone who read the article? #hpm -8:15 PM Jul 28th, 2010 MeredithGould @ctsinclair Whew, I wondered! #hpm -8:15 PM Jul 28th, 2010 MeredithGould Off topic observation: Thnx to Tweetdeck I'm noticing active healthcare industry chats going on right now (e.g., #socpharma) #hpm -8:15 PM Jul 28th, 2010 ctsinclair Ack! Wrong link for earlier Gawande article, here is the hospice/palliative one: http://bit.ly/d6pbwg The other is about cutting costs! #hpm -8:14 PM Jul 28th, 2010 inhousehospice T1: YES! Loved it-found via @Kathy_Brandt on Twitter, RT'ed it and sent it via e-mail. Posted on our FB page, too! #hpm -8:14 PM Jul 28th, 2010 ctsinclair Do you think a high percentage of #hpm staff know about this article? How could we use it to help our field? #hpm -8:13 PM Jul 28th, 2010 revdoc For all my friends: EXCELLENT article about what I do for a living! http://bit.ly /dvZUAW #hpm -8:12 PM Jul 28th, 2010 ctsinclair I heard about it from @doclake on Twitter who RT from @mchwistek and posted on @Pallimed and my FB page #hpm -8:12 PM Jul 28th, 2010 hollyby T1: I did read the article, loved it. Heard about it from @doclake on Twitter. Shared it with my FB friends via update. #hpm -8:11 PM Jul 28th, 2010 MeredithGould RT @ctsinclair: Gawande article for those who had not heard about it yet: http://bit.ly/dvZUAW (Long article so dont start now!) #hpm -8:11 PM Jul 28th, 2010 nickdawson RT @ctsinclair: #hpm tweetchat Tonight @ 9pm EST. Talking all things hospice and palliative medicine http://bit.ly/dcA3ic #hpm -8:10 PM Jul 28th, 2010 ctsinclair Here is the Gawande article for those who had not heard about it yet: http://bit.ly/dvZUAW (Long article so don't start now!) #hpm -8:10 PM Jul 28th, 2010 renee_berry I invited Terry Gross & @nprfreshair since they're talking about hospice on their program tomorrow (very long shot, but I tried!) :) #hpm -8:10 PM Jul 28th, 2010 15 of 20 7/28/2010 10:04 PM
  • 16. TweetChat - #hpm http://tweetchat.com/room/hpm revdoc EXCELLENT article! I get The New Yorker electronically on my Kindle--have told everyone I know about it! (email, verbally) #hpm -8:09 PM Jul 28th, 2010 SheyontheBay Printed the Gawande article for work; sent link to article to my frinds on the 'nets #hpm -8:09 PM Jul 28th, 2010 rawarrior RT @MeredithGould: @ctsinclair I'm going to pretend I invited @crgonzalez! #hpm //haha! -8:09 PM Jul 28th, 2010 tymeyer Posted Gawande article to facebook... #hpm -8:09 PM Jul 28th, 2010 MeredithGould @ctsinclair I'm going to pretend I invited @crgonzalez! #hpm -8:08 PM Jul 28th, 2010 tymeyer We'll find out soon enough. Will let everyone know.. #hpm -8:08 PM Jul 28th, 2010 ctsinclair Topic #1: Did you read the Gawande article in @NewYorker this week? How did you hear about it? Who did you share it with? And how? #hpm -8:08 PM Jul 28th, 2010 revdoc I retweeted about the chat... #hpm -8:07 PM Jul 28th, 2010 ctsinclair @tymeyer Oh boy (or girl)! You might be distracted! #hpm -8:07 PM Jul 28th, 2010 renee_berry hi, renee from the sf bay area in CA with @klxmedia passionate about access to #hpm -8:07 PM Jul 28th, 2010 ctsinclair Did everyone remember their homework from last week? Who did you bring to (or at least tell about) #hpm? #hpm -8:07 PM Jul 28th, 2010 tymeyer Howdy Ya'll. I'm Ty. HPM doc on Gulf Coast of Tx. I'll be involved tonight as long as my wife doesn't go into labor. #hpm -8:07 PM Jul 28th, 2010 crgonzalez Carmen Gonzalez, clinical trial strategist, social media advocate; curious about palliative care #hpm -8:06 PM Jul 28th, 2010 SheyontheBay BarbaraShey- hospice nurse, NY #hpm -8:06 PM Jul 28th, 2010 ctsinclair @equijada @DIaneEMeier hope you can join us tonight for Tweetchat #hpm -8:06 PM Jul 28th, 2010 MeredithGould <-- sociologist, writer interested in promoting clear communications & health literacy. Special interest: health-faith connection(s) #hpm -8:05 PM Jul 28th, 2010 ctsinclair Christian Sinclair blogger for @Pallimed, assoc med dir @KCHospice, board 16 of 20 7/28/2010 10:04 PM
  • 17. TweetChat - #hpm http://tweetchat.com/room/hpm member for @AAHPM (All tweets are my own!) #hpm -8:05 PM Jul 28th, 2010 hollyby Hello! Holly Yang here, #hpm doc from San Diego. Looking forward to chatting. #hpm -8:04 PM Jul 28th, 2010 revdoc Just kidding. I'm Pam--Christian's partner at KC Hospice and an ordained minister #hpm -8:04 PM Jul 28th, 2010 sharingstrength Colleen here. Plain language health writer & community manager. Interested in learning the "language" of #hpm. -8:03 PM Jul 28th, 2010 ctsinclair @revdoc DM = direct message. As for you , you know how to get in touch with me! #hpm -8:03 PM Jul 28th, 2010 revdoc Diabetes? #hpm -8:02 PM Jul 28th, 2010 inhousehospice Hi, again! It's Ashley, PR/Mktg Assistant @ In-House Hospice & Palliative Care in MI & OH. Excited to be here! #hpm -8:02 PM Jul 28th, 2010 ctsinclair This week's Tweetchat is hosted by me, but will be looking for people to host the upcoming weeks. No need to hog the mic! just DM #hpm -8:02 PM Jul 28th, 2010 sharingstrength Please lurk and participate!! RT @crgonzalez: @MeredithGould Is the #HPM chat invitation only, or can I lurk? -8:02 PM Jul 28th, 2010 MeredithGould @crgonzalez Absolutely not "invitation only." It's an open chat and all are welcome, esp. you! #hpm -8:01 PM Jul 28th, 2010 ctsinclair @crgonzalez Don't just lurk, come on in the water is nice! #hpm -8:01 PM Jul 28th, 2010 ctsinclair Hey it is 6/7/8/9 pm and time to start #HPM Tweetchat. Let's start as usual with some introductions! #hpm -8:01 PM Jul 28th, 2010 sharingstrength Hi all I'll be participating in the #HPM chat for the next hour. You can expect to see tweets about hospice & palliative medicine! #hpm -8:01 PM Jul 28th, 2010 equijada RT @renee_berry: Would love to hear @BradHStuart interviewed on @NPRfreshair about his innovative AIM program, incredible results 4patients & families #hpm -8:01 PM Jul 28th, 2010 crgonzalez @MeredithGould Is the #HPM chat invitation only, or can I lurk? -8:01 PM Jul 28th, 2010 ctsinclair RT @MeredithGould: Friends: Ill be in the #HPM chat for the next hour so 17 of 20 7/28/2010 10:04 PM
  • 18. TweetChat - #hpm http://tweetchat.com/room/hpm expect tweets about hospice & palliative medicine! 'me too!' #hpm -8:00 PM Jul 28th, 2010 MeredithGould Friends: I'll be participating in the #HPM chat for the next hour so don't be surprised by tweets about hospice & palliative medicine! #hpm -7:59 PM Jul 28th, 2010 ctsinclair @revdoc Hey #hpm -7:58 PM Jul 28th, 2010 MeredithGould RT @revdoc: RT @ctsinclair: #hpm tweetchat Tonight @ 9pm EST. Talking all things hospice and palliative medicine #hpm -7:54 PM Jul 28th, 2010 revdoc RT @ctsinclair: #hpm tweetchat Tonight @ 9pm EST. Talking all things hospice and palliative medicine #hpm -7:49 PM Jul 28th, 2010 koehlerjo RT @ctsinclair: #hpm tweetchat 2nite @ 9pm EST. Talking all things hospice & palliative medicine http://bit.ly/dcA3ic #hcsm #rnchat #hpm -7:48 PM Jul 28th, 2010 revdoc Hey #hpm -7:46 PM Jul 28th, 2010 ctsinclair #hpm tweetchat Tonight @ 9pm EST. Talking all things hospice and palliative medicine http://bit.ly/dcA3ic #hcsm #rnchat #hpm -7:45 PM Jul 28th, 2010 DianeEMeier RT @renee_berry: Program Aims to Integrate Palliative Care&ICU @MedicalNewsNet http://bit.ly/bxtwIX @CAPCpalliative awesome as usual #hpm -7:43 PM Jul 28th, 2010 CompAndChoices RT @renee_berry: Terry Gross http://ow.ly/2hWyO is hosting Atul Gawande http://ow.ly/2hWDJ on @NPRfreshair tomorrow #hospice #palliative #hpm SO EXCITED! -7:36 PM Jul 28th, 2010 CompAndChoices RT @sharingstrength: RT @ctsinclair: #hpm tweetchat Tonight @ 9pm EST. Talking all things hospice and palliative medicine http://bit.ly/dcA3ic #hcsm #rnchat -7:35 PM Jul 28th, 2010 innovchange RT @sharingstrength: RT @ctsinclair: #hpm tweetchat Tonight @ 9pm EST. Talking all things hospice and palliative medicine http://bit.ly/dcA3ic #hcsm #rnchat -7:16 PM Jul 28th, 2010 sharingstrength RT @ctsinclair: #hpm tweetchat Tonight @ 9pm EST. Talking all things 18 of 20 7/28/2010 10:04 PM
  • 19. TweetChat - #hpm http://tweetchat.com/room/hpm hospice and palliative medicine http://bit.ly/dcA3ic #hcsm #rnchat -7:13 PM Jul 28th, 2010 SheyontheBay how 'bout mandatory EOL training part of CEU updates for renewing licenses? includes mandatory palliative consult in disease algorithm #hpm -7:13 PM Jul 28th, 2010 emacartney RT @KentBottles: RT @kevinmd Palliative care shows the importance of language http://ow.ly/2h4PE #hpm -6:26 PM Jul 28th, 2010 klxmedia RT @mashsocialmedia: How Social Media Can Make Us More Productive http://ow.ly/2i0r0 #hpm -5:01 PM Jul 28th, 2010 renee_berry Program Aims to Integrate Palliative Care&ICU via @MedicalNewsNet & @MaryEllenNY http://bit.ly/bxtwIX @CAPCpalliative awesome as usual #hpm -5:00 PM Jul 28th, 2010 ctsinclair RT @MedAnthRocks: Med anthropologist Kaufman's And a Time to Die: How American Hospitals Shape the End of Life is a must read. #hpm 'true' -4:24 PM Jul 28th, 2010 doclake Gawande "We train and retrain for surgical skills. We probably need to do so for these discussions with terminally ill patients" #hpm -4:23 PM Jul 28th, 2010 renee_berry Would love to hear @BradHStuart interviewed on @NPRfreshair about his innovative AIM program, incredible results 4patients & families #hpm -4:22 PM Jul 28th, 2010 mkmackey RT @FierceHealth: Atul Gawande article in #TheNewYorker could helps raise demand for #hospice care. http://ht.ly/2hZgx #healthcare #hpm -4:09 PM Jul 28th, 2010 ctsinclair RT @doclake: I'll be up for the ADD inducing #hpm twitchat tonight after slow @NewYorker thing http://bit.ly/dcA3ic 'totally diff speed' -4:07 PM Jul 28th, 2010 inhousehospice @renee_berry Don't forget #hpm tweetchat Tnight @ 8p CT Talking all things #hospice &palliative medicine "We'll be there, too!" -4:01 PM Jul 28th, 2010 renee_berry RT @ctsinclair Don't forget #hpm tweetchat Tnight @ 8p CT Talking all things #hospice &palliative medicine http://bit.ly/dcA3ic @nprfreshair -3:59 PM Jul 28th, 2010 ctsinclair Don't forget #hpm tweetchat Tonight @ 8pm Cent. Talking all things hospice and palliative medicine http://bit.ly/dcA3ic #hcsm #rnchat -3:49 PM Jul 28th, 2010 renee_berry @Pallimed @Geripalblog thoughts? RT @DeathwDignity How far have we come in end-of-life pain management in12 years? http://bit.ly/dzaZL7 #hpm -2:40 PM Jul 28th, 2010 renee_berry #hpm What do you think? RT @DeathwDignity How far have we come in 19 of 20 7/28/2010 10:04 PM
  • 20. TweetChat - #hpm http://tweetchat.com/room/hpm end-of-life pain management in 12 years? http://bit.ly/dzaZL7 #hospice -2:39 PM Jul 28th, 2010 doclake RT @renee_berry: Terry Gross http://ow.ly/2hWyO hosting Atul Gawande http://ow.ly/2hWDJ on @NPRfreshair tomorrow #hospice #palliative #hpm -2:37 PM Jul 28th, 2010 20 of 20 7/28/2010 10:04 PM