You are on page 1of 16

#CPHC Chat – 01-29-13 Michael A.

Weiss Grassroots Initiatives/Patient Advocacy GailZahtz 1 Hour Countdown for #CPHC Today's Discussion Background Here GailZahtz Ask and answer questions before and after #CPHC on checklist for #start-up of grassroots initiatives per today's convo! GailZahtz @kate_bowman I helped a pt roommate when nurses didn't feed. Heartbreaking. Would love your input on patients helping at #cphc in 45 mins. GailZahtz Starting or involved with a grassroots initiative? Discussing how to launch and grow advocacy #CPHC 1 ET MarisaTroy #cphc hi everyone just wanted to introduce myself, nice to meet you all! GailZahtz Drive the Mini-Van now to a different carpool: #CPHC starts now with guest @HospitalPatient Background HospitalPatient Greetings everyone. FYI - Marisa Troy is assisting me w/ Crohn's Disease Warrior Patrol. THX 4 having us. #cphc GailZahtz @HospitalPatient We're thrilled to have you! I have posted background at and set up Q&A's for you for afterwards! #cphc GailZahtz Hi @MarisaTroy I heard you received the 1st hospital visit from @hospitalpatient Can you tell us about impact? #cphc HospitalPatient Marisa was VISITING the 9-yr old WITH ME - she was AMAZING. #cphc MarisaTroy #cphc It was an amazing visit with Damon & his family - spent about hr 1/2 going through hosp issues, quests.. GailZahtz Did this help? RT @MarisaTroy: #cphc It was an amazing visit with Damon & his family - spent about hr 1/2 going through hosp issues, quests MarisaTroy #cphc really felt we put their mind at ease,the way we interacted was so different than the way they were used to w/drs CHopeMurray joining for the first time, learning as I go #cphc NatriceR @CHopeMurray welcome;) #CPHC Thehealthmaven Hi there everyone - #cphc GailZahtz LeAnna! @thehealthmaven Honored you can join us! Looking forward to your input. Today we're discussing patient to patient advocacy #CPHC Dlschermd #CPHC Hi all. GailZahtz @dlschermd Great to see you David- you have been following- please share your interest in grassroots intitiatives. #CPHC nursefriendly I see a few familiar faces :) @thehealthmaven @dlschermd @natriceR :) and some new faces too! #cphc NatriceR @thehealthmaven @nursefriendly @dlschermd hi all, Natrice from Ontario here to learn & inquire #CPHC Teaminspire Hello to #cphc -- John Novack here, from Inspire. online support communities for patients and caregivers.

Docnieder Here but late and lurking. Patients start again at 1 #cphc GailZahtz @docnieder Glad you can stop by- questions from crowd starting- feel free to ask @hospitalpatient about patient to patient for docs #cphc StorkBrian #cphc Here but multi tasking Poorly;) CSlaterMD Hi All, so sorry to be late..........pesky work don't mean to interrupt. Happy to be here #cphc HospitalPatient Patients "relating" 2 other patients is SO COMFORTING & breeds HOPE & HEALING. That's idea behind CDWP. #cphc MarisaTroy #cphc exactly @HospitalPatient REALLY felt like we gave them HOPE!!! :)) HospitalPatient Marisa was able to relate to Damon in a unique way & he calmed down as he was terrified in the hospital - understandably. #cphc HospitalPatient I spoke to his parents about how most effectively to deal with the Physicians and Medical Professionals - they were overwhelmed. #cphc Nursefriendly When discouraged, that is a great gift to give RT @MarisaTroy #cphc exactly @HospitalPatient REALLY felt like we gave them HOPE!!! :)) #cphc HospitalPatient Gail - THX so much for ur help w/ us launching the Crohn's Disease Warrior Patrol! #cphc Dlschermd @GailZahtz These are awesome. It's 'People Therapy'! #CPHC GailZahtz The power of the crowd and patients helping patients! RT @dlschermd:These are awesome. It's 'People Therapy'! #CPHC giasison Love this!RT @GailZahtz: The power of the crowd and patients helping patients! RT @dlschermd:These are awesome. It's 'People Therapy'! #CPHC HospitalPatient "People Therapy" is GREAT term in this age of #Doctors being pulled in SO many directions by #Health #Insurers. It's #Patient TLC. #cphc DunkTheJunkFood @drseisenberg @GailZahtz @dlschermd #CPHC right on "Power of the CROWD" #WCD use our crowd 2 occupy #PepsiHalftime GailZahtz @teaminspire John, honored to have you. Today, right up your neck of woods, we are looking at patient advocacy #CPHC GailZahtz @MarisaTroy Marissa, how did Michael help give you hope? @HospitalPatient #CPHC Dlschermd #CPHC Hospitals and/or non-profits should have training programs for visiting pt advocates. HospitalPatient @dlschermd Good point re organized Hospital Programs. I hope to tap into that w/ CDWP. They've expressed interest in CDWP. #cphc drseisenberg What's CDWP? #CPHC HospitalPatient CDWP is "Crohn's Disease Warrior Patrol" a Hospital Patient Visitor Ambassador Program 4 folks w/ #Crohns and #IBD. #cphc HospitalPatient CDWP is based on Matching Veteran #Crohns #Patients w/ newly hospitalized #IBD #Patients via geographic proximity. #cphc nursefriendly Have to wonder why more don't RT @dlschermd #CPHC Hospitals and/or non-profits should have training programs for visiting pt advocates #cphc

giasison @HospitalPatient Training much needed in continuing healthcare education specially now that its evolution is ramping up @dlschermd #CPHC sandyhubbard Advocacy and empathy are accelerated through networking opportunities such as #CPHC - Such amazing people participate in these discussions! GailZahtz good contributors make great community! MT @sandyhubbard: Advocacy & empathy are accelerated through networking opportunities such as #CPHC GailZahtz @drseisenberg Welcome! Mutual fan club! Today powerful talk of a patient and her mentor in a new patient to patient program. #cphc Nursefriendly @HospitalPatient There are few situations better for a #patient, than talking to another #patient who "Has Been There" :) #cphc MarisaTroy #cphc That is why I love the "Patients helping patients" idea so much! MarisaTroy #cphc when I was in the hosp, the only people I would respond to were the nurses/people who have experienced anything GailZahtz @nursefriendly Feel free to share your experiences too in patients/peers helping directly! @MarisaTroy @HospitalPatient #cphc Dlschermd #CPHC What about an app that connected you to a trained P2P advocate? HospitalPatient My only issue w/ a "General" Patient Visiting Program is the nuances of #Crohns & #IBD. Experiences breeds wisdom. #cphc MarisaTroy #cphc it is AMAZING what a difference it can make to see a REAL person with REAL experiences be there with you CHopeMurray @dlschermd an app that connected you to a trained P2P advocate - like the thought, suggests an open db of advocates + their expertise #cphc sandyhubbard @dlschermd Training could be automated without being impersonal, which would help overcome obstacles to training, reinventing wheel. #CPHC dlschermd @sandyhubbard Totally agree. Automated and Iiteractive would be best. #CPHC MarisaTroy #cphc @dlschermd i think the app would be great in connecting someone to a pt adv locally and then they could meet ?? GailZahtz As everyone is introducing, we all wanted "unmoderated" so please free to directly ask questions to @HospitalPatient and @marissatroy #CPHC drseisenberg @HospitalPatient It's truly "we're all in this together" as human beings! We are ALL patients in the words of @hjluks #CPHC GailZahtz @giasison @NatriceR Wave to both- so much power in Feel free to ask questions of @HospitalPatient #cphc HospitalPatient We call "Veteran" #Crohns and #IBD patients "Warriors" since the #diseases and hospitalizations are SO difficult. #cphc

GailZahtz How do "veterans" warriors help? RT @HospitalPatient: since the #diseases and hospitalizations are SO difficult. #cphc CHopeMurray @HospitalPatient warriors is a perfect word to describe them experience/empathy cannot be simulated, the battle has to have been won #cphc Dlschermd @MarisaTroy @wegohealth is a great group to check out. #CPHC HospitalPatient @dlschermd I work w/ Wego often - yes - they r a wonderful organization. #cphc Nursefriendly @GailZahtz @MarisaTroy @HospitalPatient We've long known support groups can help #families, #caregivers, with #substanceabuse #grief #cphc MarisaTroy #cphc @nursefriendly support groups are wonderful they are just not the same one on one support that benefits pts GailZahtz @MarisaTroy Please talk about the difference between support groups and your experience with Crohn's Warrior Patrol #CPHC Burgessct One creates the opportunity for the other perhaps (group feeds to 1:1)? RT @MarisaTroy: #cphc @nursefriendly support groups are wonderful . Dlschermd @MarisaTroy @nursefriendly Agree. People may be inhibited in group setting in support grp. #CPHC Nursefriendly @burgessct Yes, what one may be nervous about saying in public, are more likely to discuss in private one on one :) #cphc MarisaTroy #cphc @GailZahtz support groups are great for info & seeing not alone, CDWP is more hands on, one on one support – Dlschermd @NatriceR @gailzahtz @marisatroy I led a cardiac support group for 20 years. Was great but has drawbacks for a few participants. #CPHC HospitalPatient Support Groups involve a Mutual Need whereas CDWP is simply #Crohns Warriors giving back all they've learned & experienced. #cphc Nursefriendly @dlschermd @MarisaTroy You'd be surprised :) Once they know it is there, can always touch base one/one outside of group :) #cphc sandyhubbard Support groups are useful once pts have accepted diagnosis and gone through mental process whereas pt2pt contact can help early. #CPHC MarisaTroy #cphc I agree support grps can feed into the CDWP,but i think having a pt visit in the hosp, HEALTHY,happy is inspiring Dlschermd @GailZahtz @natricer I led a group and did educating then had a patient lead second half. #CPHC HospitalPatient @dlschermd Integrating #Patients into the mix is wonderful. Nice job. #cphc HospitalPatient I think organizing #Patient #Hospital Visits has 2 b #Disease-specific 4 maximum credibility & effectiveness. Hence, CDWP. #cphc nursefriendly @GailZahtz @MarisaTroy @HospitalPatient With an obvious shortfall in time with #doctors, #nurses, #hcps, #patients need alternatives #cphc

nursefriendly @GailZahtz @MarisaTroy @HospitalPatient Many #patients, #families feel lost navigating #healthcare. Doesn't have to be that way. #cphc giasison @nursefriendly @GailZahtz @MarisaTroy @HospitalPatient Well said Andrew! There's a need to innovate on learning tools. #CPHC GailZahtz @burgessct #CPHC we are exploring patient to patient grassroots with @HospitalPatient answering questions. Background Pfanderson @drseisenberg @chopemurray @unha_engels some can make themselves available to the public, but it can also be really exhausting #cphc GailZahtz @pfanderson @drseisenberg @chopemurray @unha_engels How can we scale efforts so less exhausting? #CPHC CHopeMurray @pfanderson @dreisengerg @unha_engels good pt., community needs to safeguard their efforts, be aware of exposure and overuse #cphc Nursefriendly @pfanderson Agreed, can take a huge emotional toll guiding others through their #healthcare issues. Remember #Selfcare. #cphc Pfanderson @nursefriendly hard to protect yourself when others need. Yes, impt #cphc Nursefriendly Need large numbers :( RT @GailZahtz: @pfanderson @drseisenberg @chopemurray @unha_engels How can we scale efforts so less exhausting? #CPHC Nursefriendly @GailZahtz To avoid burnout, need a core, committed group, willing to train others. Train the trainer :) #CPHC GailZahtz @nursefriendly IMO this program where @HospitalPatient is training veterans of Crohns is a great model for training the trainer! #CPHC Nursefriendly Need to know when to say "NO" RT @pfanderson: @nursefriendly hard to protect yourself when others need. Yes, impt #cphc Sandyhubbard Other patients can help supply information on the nuances of illness, while MDs often have time only for big picture, treatment scope. #CPHC HospitalPatient Veteran #Crohns & #IBD patients show those hospitalized they will MAKE IT THRU despite all the unknowns inherent in the #disease. #cphc Pfanderson @sandyhubbard bingo! You nailed the difference between HCP 2 pt communication vs pt2pt #cphc Nursefriendly @sandyhubbard Doctors don't have time to address the real life issues, of affording medications, arranging childcare, sick parents :( #CPHC Nursefriendly @sandyhubbard Caring for the #disease or #illness is only one piece of the puzzle. You still have to be a parent, pay the bills :( #CPHC Nursefriendly @GailZahtz @MarisaTroy @HospitalPatient A #patient or #family member who has been in the situation can outline the pitfalls, red flags #cphc HospitalPatient Veteran #Crohns #patients help by walking the hospitalized patient thru the often horrors of a an #IBD episode. #cphc MarisaTroy #cphc @nursefriendly I think a #patient of #family member can provide equally valuable support

Nursefriendly Natrually :) RT @MarisaTroy: #cphc @nursefriendly I think a #patient of #family member can provide equally valuable support Dlschermd @MarisaTroy Yes. Location service and disease state or health issue. Maybe even crossreferencing common HCP. #CPHC giasison @dlschermd @MarisaTroy Disease state, health issue well said! #CPHC AfternoonNapper @drseisenberg @CHopeMurray @unha_engels Designed exactly that kind of system at @IDEOorg during @StanfordMedX. @dennisjboyle #CPHC ChrisCarrollMD @GailZahtz My wife & I are both adept at giving the "talking-them-off-the-ledge" talk to parents of newly diagnosed. #autism #CPHC Pfanderson @ChrisCarrollMD @gailzahtz I'd like to hear more abt that. My son is #asd, we were desperate for Dx long b4 we got it #cphc GailZahtz @pfanderson @ChrisCarrollMD Our goal is to connect physicians directly with patients and caregivers, and will likely start with peds #CPHC charter4values @nursefriendly @GailZahtz @MarisaTroy @HospitalPatient #cphc It's about relationships, caring, understanding. GailZahtz @charter4values Agree! How do we grow the relationships with caring and understanding? #cphc HospitalPatient #Crohns & #IBD also present unique challenges in dealing w/ #Physicians b/c there r just 2 many unknowns from #Diagnosis 2 Treatments. #cphc HospitalPatient Even the most compassionate of #Physicians have a hard time dealing w/ the unpredictability & difficult diagnoses from #Crohns. #cphc GailZahtz @ChrisCarrollMD How can physicians and other patients help the newly diagnosed? #CPHC HospitalPatient @GailZahtz #Physicians can help by linking a #Patient 2 a Veteran #Crohns or #IBD patient. "Perspective" is best obtained that way. #cphc Thehealthmaven Always helpful to address the top 5 questions every newly diagnosed patients tend to ask or have concerns about - ice breaker #cphc GailZahtz @thehealthmaven Do you think a patient by the bed who may not be currently experiencing pain, etc could help you with top 5 questions? #cphc GailZahtz @HospitalPatient When we talked ahead- you shared how helpful you can be to physicians when you are there. Elaborate? #CPHC GailZahtz @MarisaTroy What have you experienced is the value in one on one support? #CPHC Dlschermd @GailZahtz One patient's story is important to another and that's why TV news stories always feature one. #CPHC MarisaTroy #cphc @GailZahtz you can tailor convo, quests, info to the specific person, their life, situation, emotions.. ChrisCarrollMD @GailZahtz This'd be a great business opportunity! Similar to care pages that hospitals/families use to update friends electronically #CPHC

GailZahtz @ChrisCarrollMD No question- would love chance to bring vision of one and one and one to many secure communications for docs and pts! #CPHC Pfanderson @GailZahtz @chriscarrollmd sorry, I'm lost. What project ? #cphc GailZahtz @pfanderson @chriscarrollmd Background of today is Chris started asking about future. #CPHC ChrisCarrollMD @GailZahtz @pfanderson Not a defined project, just an idea. Feel free to run with it! #CPHC Pfanderson @GailZahtz @drseisenberg @chopemurray @unha_engels distribute lad, fail safes, backups, triage #cphc CHopeMurray @pfanderson @dreisenberg @unha_engels it also needs to warriors to proselytize, find brothers in arms and build a cohort of ministry #cphc GailZahtz @dlschermd @NatriceR @marisatroy What are strengths and drawbacks of different patient led support? #CPHC NatriceR @GailZahtz patient led support more accepted, walking the walk helps pt understand #CPHC Drseisenberg Patient to patient is real, authentic, been there done that, comes from the heart. #CPHC HospitalPatient Strength is Credibility of #Patient specific Support. I don't see a downside other than being careful in MATCHING Patients. #cphc MarisaTroy #cphc @HospitalPatient agree on need for MATCHING patients properly Dlschermd @MarisaTroy @hospitalpatient Can match patients via questionnaires (duration of illness, fam support, age,sex, personality)#CPHC Sandyhubbard Can be challenging to be a pt2pt advocate when some hosp staff don't want you to give pts "too much hope." #CPHC MarisaTroy #cphc strengths- real people, real experiences drawbacks- can be info overload to a degree Dlschermd @drseisenberg @gailzahtz @natricer @marisatroy Strength: commonality, socialization. Minuses:limited time, inhibitions in discussing.#CPHC GailZahtz @NatriceR Patient led support more accepted by patients and caregivers? #CPHC Pfanderson @CHopeMurray @dreisengerg @unha_engels easy 2overload someone who really cares. Nd protocols 2protect caregivers as well as receivers #cphc MtnMD @GailZahtz #CPHC pt to pt gives more options, opinions. Cures and tx often come from those w dxs. Experiential learning. giasison @harrygreenspun In my experience pts appreciate it more Harry. Makes them feel that their cases are well studied. #EHR #CPHC HospitalPatient EVERY email I receive from #Crohns #patients who sign up expresses how they wish CDWP existed when they were in the #hospital w/ #IBD #cphc GailZahtz @MtnMD Great to see you Kelly! What have been your experiences with strength patient support? Drawbacks? #CPHC

charter4values @GailZahtz #cphc Restore universal human values, commit to enhancing them, teaching & role-modeling. Respect. See: thehealthmaven To support newly diagnosed patients focus info on where they are;too much& too wide info=lost teachable moments. 1:1 & 1:many valuable #cphc burgessct Or moving from general info to specific - imo multi-level support - group info; specific assist as well w/HIPAA and Privacy forefront #cphc sandyhubbard Great point, Christopher RT @burgessct HIPAA and Privacy #CPHC CHopeMurray @sandyhubbard @burgessct HIPPA and privacy are important, but much can be gained from being transparent without providing key details #cphc Burgessct @CHopeMurray absolutely - training your population on how to do that is key #CPHC sandyhubbard @CHopeMurray I agree and yet often that is a big (legal) obstacle for sharing neutral info that can be helpful to all. @burgessct #CPHC CHopeMurray @burgessct and 1 of the advantages of "social": collectively we can help ourselves to communicate better (inc suggested HIPPA changes) #cphc CHopeMurray @sandyhubbard @burgessct agreed - yet is shouldn't be an obstacle, usually caused by misunderstanding, non-knowing or a bad process #CPHC sandyhubbard @CHopeMurray Agree. Aso some are really busy/over burdened and find it easier to say "no" rather than "how can we do this." #CPHC @burgessct GailZahtz @sandyhubbard @CHopeMurray @burgessct How can we make it easier for people to say yes? #CPHC Burgessct Q? How can we make it easier for people to say yes? #CPHC -- Perhaps 1 step show how much is already avail w/o their having to reveal PHI CHopeMurray @GailZahtz @sandyhubbard @burgessct seems you have already started - discover, engage, educate, practice and then refine/expand :) #cphc GailZahtz @burgessct PHI? You had me till then! #CPHC Burgessct Personal Health Information - no need to reveal to learn RT @GailZahtz: @burgessct PHI? You had me till then! #CPHC GailZahtz @burgessct No, seems PHI only a need to know- often though patients will share with other patient veterans. #CPHC GailZahtz @CHopeMurray @sandyhubbard @burgessct Discover, engage, participate, practice! Love this. How can we all grow? #CPHC sandyhubbard The #YesProject RT @CHopeMurray Discover, engage, educate, practice and then refine/expand :) #CPHC CHopeMurray @sandyhubbard LOL - checked out #yesproject looking for other contributions, but you started here - sign me up, I like it #cphc sandyhubbard @CHopeMurray Okay - I'm claiming #YesProject as a @sandyhubbard hashtag! :) #CPHC GailZahtz @sandyhubbard @CHopeMurray I missed #YesProject- look forward to hearing! #CPHC

HospitalPatient I wish #CCFA would do a better job in Raising Awareness about #Crohns & #IBD but they don't "get" tru #Patient Perspective. #cphc HospitalPatient #CCFA raises money and does what those orgs do but w/ #Crohns & #IBD something 1on-1 like Crohn's Disease Warrior Patrol is NEEDED. #cphc GailZahtz @drseisenberg @dlschermd The power of the patient story! @HospitalPatient How do you find that helps your work? #cphc NatriceR @GailZahtz #CPHC I tend to believe a pt point of view over someone who knows info but hasnt actual exp. MarisaTroy #cphc @NatriceR I feel the same way, always listened to REAL stories those were the ones that meant something Pfanderson @dlschermd @gailzahtz stories help carry info, engagement, but also give impression that all are like one. Risk. #cphc Pfanderson @dlschermd @gailzahtz agreed, stories ESSENTIAL but nd to use w/ awareness of constraints #cphc charter4values #CPHC @MarisaTroy @NatriceR Stories give meaning; help patients make sense of experiences; help doctors, nurses, others understand. CSlaterMD Have any of the patient lead support participants had HCPs as guests? does it work? too intimidating or off putting? just asking #cphc GailZahtz Great question @hospitalpatient ? RT @CSlaterMD: Have any of the patient lead support participants had HCPs as guests? does it work? #cphc HospitalPatient @CSlaterMD Good ?. Haven't encountered it yet as we want to first build TRUST. But I've helped Parents of #Crohns #Patients w/ HCPs. #cphc HospitalPatient #Crohns & #IBD #Patients r often suspect of HCPs b/c they get frustrated w/ their #disease having so many perplexing variables. #cphc Dlschermd @CSlaterMD I had non-physician guests: travel agents, comedians with illness, dietitians, etc. very fun and interactive. #CPHC CSlaterMD @dlschermd sounds fun! #cphc HospitalPatient It's NOT the fault of the #Medical Professionals & in fact #Nurses have saved me from SO MANY difficult hospitalizations. #cphc GailZahtz Well said and important! MT @HospitalPatient: It's NOT the fault of the #Medical Professionals & in fact #Nurses have saved me from. #cphc CSlaterMD @HospitalPatient do you think think #crohns #patients tend to not trust their #providers? #cphc HospitalPatient It's just that #Crohns & #IBD can b SO CHALLENGING that info from a patient who's survived is VALUABLE. #cphc HospitalPatient @CSlaterMD They trust them but they often don't like what they HEAR & that's the fault of the disease. But that creates "issues." #cphc MarisaTroy #cphc exactly @HospitalPatient ! the complexity of the situation/disease creates issues..its usually not the dr : - / CSlaterMD Fair enough@HospitalPatient They trust but often don't like what they HEAR & that's the fault of disease. But that creates "issues." #cphc

GailZahtz @CSlaterMD Agree. How can all parts of the team- physcian, patient, helpers, assist in making hard discussions easier? #CPHC HospitalPatient @CSlaterMD I'm really serious about this. #Doctors r WONDERFUL but often #Crohns #diagnoses & treatments baffle them. #cphc CSlaterMD @HospitalPatient not GI specialist but think in part its "little of this little of that" if it doesn't work try something else. scary #cphc HospitalPatient @CSlaterMD exactly & after a while pt feels like a guinea pig & may blame doc but that is NOT FAIR - just tough disease. #cphc GailZahtz @HospitalPatient @CSlaterMD IMO your opinion of not placing blame on medical profession can open a lot of dialogues! #CPHC NatriceR one example, granddaughter sp needs, support grp of parents Hugely helpful in discussing info, offering ideas, support in crisis etc #CPHC Drseisenberg Patient to patient is pure generosity of spirit; it's soul to soul healing! #CPHC GailZahtz @MarisaTroy @hospitalpatient We have a lot of questions on how this helps and the role of treating physician- could you elaborate? #CPHC MarisaTroy #cphc @GailZahtz questions on the role the MD will play? GailZahtz @MarisaTroy Yes, struck me in pre-chat interview was @HospitalPatient talked about how this role helps MD-PT communication #CPHC HospitalPatient #MD can help promote #Crohns Disease Warrior Patrol as it helps their Patient Population. Collaboration is needed 4 Chronic Disease. #cphc MarisaTroy #cphc @GailZahtz I think the CDWP would serve as kind of a middle man (to an extent) between physician and pt Dlschermd @MarisaTroy @gailzahtz I would see it more as patient support than middle person. Want it on pt side not doc for trust. #CPHC GailZahtz @MtnMD How can we bridge the gap to include the pt input, new learning, and seasoned training from physicians? #CPHC Thehealthmaven @GailZahtz great question - in the right context, could stimulate dialog; but, the goal is to lean into a conversation & not 'solve' #cphc Pfanderson @thehealthmaven agree! Top 5 or 10 tell folk right away they aren't alone, there are answers #cphc CSlaterMD Gr8 qx RT @GailZahtz @MtnMD How can we bridge the gap to include the pt input, new learning, and seasoned training from physicians? #cphc CSlaterMD @CHopeMurray @burgessct I think "social" will help bridge the communication gap btwn #hcp and #pt........or at least i hope! #cphc CHopeMurray My bet is on it RT @CSlaterMD: @burgessct I think "social" will help bridge the communication gap btwn #hcp + #pt...or at least i hope #cphc GailZahtz @thehealthmaven @HospitalPatient @pfanderson would love to explore her tweet above about how we can learn in the conversation itself! #CPHC

HospitalPatient 1st few paragraphs of this Link in my Blog perfectly captures NEED 4 #Crohns Disease Warrior Patrol #cphc HospitalPatient #Crohns & #IBD can have have physical, mental, emotional, financial, professional, social & familial #Disabling effects. #cphc CSlaterMD @HospitalPatient definitely! #cphc sandyhubbard @nursefriendly Fear and concern for family members can create a foggy haze that makes action and advocacy challenging. #CPHC charter4values @HospitalPatient @sandyhubbard @nursefriendly #CPHC So true. Each will need different things at different times along their journey. MarisaTroy #CPHC pt adv are more on side of pt just meant to help guide through complicated process GailZahtz @MarisaTroy It is a very complicated process. How can this/ has this guided you? How would you adivse other patients and groups? #CPHC Burgessct .@MarisaTroy agree re pt adv, need to *democratize* info 4 patient put their fingers on what is avail; not what others think they need #cphc GailZahtz @CHopeMurray @burgessct @MarisaTroy "democratize" "collectively" "communicate" keep going---- interesting lead in! #CPHC Thehealthmaven There is probably a statistic somewhere about lack of info related to depression, anxiety. Getting info out priority :1:1, 1:many #cphc GailZahtz @thehealthmaven Would love to see statistics lack of info and relations to anxiety etc. Heard recently about "rumplestilkskin theory" #CPHC GailZahtz @MarisaTroy It is a very complicated process. How can this/ has this guided you? How would you adivse other patients and groups? #CPHC HospitalPatient Please note - I don't expect #Doctors & #Hospitals 2 offer "TLC" b/c our system prevents it. It's "Patients helping Patients." #cphc GailZahtz Great! So role of docs vs pts? MT @HospitalPatient:- I don't expect #Doctors & #Hospitals 2 offer "TLC" b/c our system prevents it. #cphc Nursefriendly @GailZahtz We need to help them help themselves, recognize the value of their experience to others. #CPHC charter4values @GailZahtz @MtnMD #CPHC For each patient/family, need to "start with where patient is at", listen to & HEAR the patient -- what they desire MarisaTroy #cphc @GailZahtz the whole diagnosis, ibd, surgery, decision making process you mean? MtnMD @CSlaterMD @gailzahtz #cphc right now laypeople can talk but doctors, for most part, can't. HospitalPatient Being 2 close 2 a #Crohns or #IBD situation can render 1 helpless no matter how much they care. That's where Veteran Patients help. #cphc MarisaTroy #cphc @HospitalPatient agree, the CDWP can help give fresh perspective, insights, experiences from someone who has been MarisaTroy #cphc @HospitalPatient there but is a little removed too

HospitalPatient #Pain Management, e.g., is a BIG issue in #Crohns & #IBD & some #patients don't know such a specialty exists. That must change. #cphc HospitalPatient I intend to help #crohns & #IBD #Patients become aware of ALL their options from #drugs to #disability. #cphc GailZahtz @MarisaTroy If you can expand on the roles and your gain between patients, physicians and how helped by veterans would be invaluable! #CPHC MarisaTroy #cphc @GailZahtz veteran warriors share their stories, experiences, insights, feelings about whatever they have been MarisaTroy #cphc #gailzahtz that the pt can relate to, drs dont have to spend AS MUCH time guiding them thru process but as] MarisaTroy #cphc M said, it is a collaborative process, a veteran allows pt to feel like they have someone in their corner GailZahtz @HospitalPatient Ah, would love week on pain mgmt. In meantime at I was struck by your start up list. Explore? #CPHC HospitalPatient #Patients gain from CDWP b/c they get relate-ability, hope & comfort. Helps w/ their peace of mind as well. #Crohns #cphc HospitalPatient #Physicians help from #Crohns Patrol b/c it's another "tool" in their arsenal to help these #Patients many of whom have bad options. #cphc HospitalPatient #Hospitals benefit from #Crohns Patrol b/c now they have a "service" which offers insight, hope and aids in physical/mental healing. #cphc Dlschermd @HospitalPatient I think many physicians would welcome such an aide as they likely share frustration as well. #CPHC CSlaterMD totally agree@dlschermd @HospitalPatient I think many physicians would welcome such an aide as they likely share frustration as well. #CPHC GailZahtz @HospitalPatient Could you talk about starting a new grassroots non-profit like you list at #CPHC would help many! HospitalPatient Even #Insurers have embraced #Crohns #Disease Warrior Patrol & that's why I am raising over $500,000 to initially fund it. #cphc HospitalPatient A great deal of money is needed to RAISE AWARENESS of #Crohns & #IBD and then of our Service. We also want to help w/ NEW #Research. #cphc GailZahtz @HospitalPatient In addition to money, you had a list- start web, make tshirts, incorporate etc- I set up a Q&A card to explain more #CPHC HospitalPatient @GailZahtz In order to raise the kind of $$ I need, I am forming Non-Profit Corp and seeking IRS Tax Exempt status as charitable org. #cphc HospitalPatient Will take MONTHS 2 get IRS approval so we will b selling T-shirts to raise $$ 2 build customized website. See #cphc HospitalPatient After IRS approval, we will be working w/ 4 "Crowd Source Funding." Wall Street friends will also b helping me. #cphc

HospitalPatient CDWP will also have Advisory Board of Influential Names in #HCSM b/c I've been active member of that community 4 yrs b/c of my Blog. #cphc CSlaterMD @GailZahtz @sandyhubbard @CHopeMurray @burgessct are we talking "yes" to education? collaboration? whole patient care? what? #cphc GailZahtz @dlschermd @HospitalPatient How can we connect more physicians who want with more patient advocates willing? #CPHC Dlschermd @GailZahtz @hospitalpatient Id start with non-profits. Docs associated with them care. #CPHC Sandyhubbard @CSlaterMD "Yes" to opening useful networking and advocacy doors that the fear of HIPPA ramifications often keeps closed. @GailZahtz #CPHC CSlaterMD @sandyhubbard Ah, thank you! #CPHC Dlschermd #cphc This concept has been seen to benefit children for a long time. Time for adults. #CPHC charter4values @dlschermd @HospitalPatient #CPHC Agree. There are a number of ways, strategies to help. Resources important. Ddsnorth ODSP disabled malnourished! dd RT @dlschermd #cphc This concept has been seen to benefit children for a long time. Time for adults. #CPHC MarisaTroy #cphc @GailZahtz after visiting Damon&family, i felt like we made them feel less alone, we werent just drs or med ppl MarisaTroy #cphc @GailZahtz that's what I think/hope the warrior veteran would provide, light, hope, breathe of fresh air..real GailZahtz @MarisaTroy Connection and not being alone can be very powerful! #CPHC HospitalPatient CDWP grew out of #Crohns #Patient benefits I saw in #hcsm. It's AMAZING how empowering it is to relate 2 another. #cphc MarisaTroy #cphc @HospitalPatient I cant tell you the difference having this would have made for me!! CHopeMurray 1st time encountering CDWP + v impressed, it resonates with IQ, EQ + that part of us we call the soul - best of all it can be imitated #cphc HospitalPatient Having been hospitalized over 200 times and enduring 20+ surgeries 4 my #Crohns, CDWP seemed very logical 2 me as I know the fears. #cphc GailZahtz @HospitalPatient How can we, a diverse group, help duplicate programs like yours in different specialties? Advise? Tips? #CPHC Devincfoster @GailZahtz @dlschermd @HospitalPatient how abt online communities? My Londn team's building a PHR that's also a health social network. #cphc GailZahtz @devincfoster @dlschermd @HospitalPatient If we can then take offline to one on one relationships. Would love to hear more! #CPHC Devincfoster @GailZahtz thanks so much, Gail! Indeed, I'd love any feedback you might have on (Currently trialling in the UK) #CPHC

GailZahtz @devincfoster Would love to see what you're doing and how we can help! #CPHC CSlaterMD @HospitalPatient is the pediatric population a part of the #CDWP? huge need there too! #CPHC HospitalPatient @CSlaterMD Absolutely. In fact our 1st visit was with a 9-yr old boy who struggled w/ #ostomy issues. See pic #cphc GailZahtz @HospitalPatient Sorry to push- but you have captured something huge- how can we help duplicate and replicate to help even more pts? #CPHC MarisaTroy #cphc I think once this gets going it will be easier to expand it to other areas HospitalPatient #crohns or #IBD Warriors or Patients IN NEED can SIGN UP at #cphc MarisaTroy #cphc @GailZahtz were you thinking other pts besides those with #ibd? GailZahtz @sandyhubbard Yes, everyone knows I am a stickler for this: scale, duplicate, integrate- only way we can make big changes! #CPHC GailZahtz @MarisaTroy Yes. If CDWP focuses on knowledge area of IBD/Crohn's and other patients can grow on their own, within, very powerful! #CPHC GailZahtz @sandyhubbard @CSlaterMD How can we grow useful networking and advocacy doors? #CPHC MarisaTroy #cphc I think we need to get hospitals involved too CSlaterMD yes, and GI clinics with LICSW! all #healthcare outlets! @NatriceR RT @MarisaTroy: I think we need to get hospitals involved too #CPHC sandyhubbard @MarisaTroy Getting big name hospitals onboard with this as a PR strategy would help their goals while supporting mission of Warriers. #CPHC HospitalPatient @sandyhubbard #Hospitals r already interested - they just need 2 c it in practice - & we r working as fast as possible 2 make happen. #cphc Dlschermd @GailZahtz @kamiyamay @hospitalpatient Absolutely. They can garner $ and other support and PR, and gather patients. #CPHC MarisaTroy #cphc @sandyhubbard I agree and I think it would truly benefit them as well sandyhubbard @HospitalPatient Creating templates that hospitals can adopt and sub-brand within the bigger branding of the program could help. #CPHC HospitalPatient @sandyhubbard Great idea. Thank you. #cphc MarisaTroy #cphc I think once hospitals, other organizations, drs, pts, etc sees this in action LOTS of others will follow!! HospitalPatient Note - CDWP Website will B updated substantially 4 best MATCHING of #Patients but web URL address won't change. #cphc sandyhubbard This is to my earlier point that some of this has to be automated so ppl are not reinventing the wheel. @GailZahtz duplicate/replicate #CPHC GailZahtz @dlschermd @Kamiyamay @hospitalpatient Would like to explore this- you suggest a system representative to help pt to pt involvment? #CPHC

HospitalPatient I will also b spreading the word about #Crohns #Disease Warrior Patrol thru various Speaking and TV appearances coming up. #cphc CHopeMurray v RTworthy RT @NatriceR: RT @HospitalPatient: #crohns or #IBD Warriors or Patients IN NEED can SIGN UP at #cphc charter4values @CHopeMurray @HospitalPatient #CPHC Agree. Sounds like a great program that's moving forward with strong support. GailZahtz Wow! 2 minutes left. I set up Q&A cards about starting grassroots intitatives. Post about CDWP at for comments. #CPHC HospitalPatient THX so much 4 focusing on #Crohns Disease & #IBD Warrior Patrol & we will keep all updated as we proceed. #cphc HospitalPatient I'm always avail 2 answer ?s & to learn from everyone participating as, after all, we r Patients helping Patients. :) #cphc CHopeMurray @HospitalPatient I would be v interested in knowing how social media has helped CDWP so far and what impediments still lie ahead #cphc HospitalPatient @CHopeMurray Medstartr will b a test as they help raise money 4 #Healthcare Startups. My presence in #hcsm has helped greatly. #cphc GailZahtz @HospitalPatient We continue to promote your efforts all week across platforms. Please take time to answer at #CPHC Thehealthmaven Thanks all! #cphc CSlaterMD TY @HospitalPatient and @GailZahtz great ride this afternoon. learned lots now back to work #cphc #CPHC NatriceR have a great day all, fascinating to see the wheels turning & ideas growing..take care and @gailzahtz grt moderating #CPHC Kamiyamay #CPHC Thank you @HospitalPatient @GailZahtz From pain to change in healthcare. Simply the best! GailZahtz @Kamiyamay @dlschermd @hospitalpatient Wonder if would be value in a united coalition of physicians, pts and all to help systems... #CPHC sandyhubbard @HospitalPatient If you connect with me on LinkedIn, I am happy to throw ideas in the pot from a marketing standpoint. #CPHC GailZahtz @sandyhubbard @HospitalPatient AHHH connecting more! Hopefully this hour will lead to many good things for CDWP! Yeah #CPHC Community action HospitalPatient GREAT Chat - Thx Gail and everyone for ur time, interest and support. T-shirts avail in 2 weeks :) See #cphc

GailZahtz @HospitalPatient Thanks for joining. As you get me more links, I will continue to put up, did get that fabulous back of T-shirtsup! #CPHC

MarisaTroy #cphc I can be reached here, or if anyone wants to chat more/bounce ideas around! MarisaTroy #cphc GREAT talking/meeting all of you! YAY for community action is right! charter4values @HospitalPatient @sandyhubbard @CHopeMurray #CPHC If would like US & international connex, consider Charter partnering