#WEGOHealthChat Transcript
Healthcare social media transcript of the #WEGOHealthChat hashtag.
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See #WEGOHealthChat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Social Health Network @socialhealthnet Hello everyone and welcome to the September #WEGOHealthChat! This month, we're joined by special guest @gabehoward29 to discuss the moral, ethical, and professional obligations of being a *paid* #PatientLeader. https://t.co/1AOVxqMwBf |
| Social Health Network @socialhealthnet If you're joining the #WEGOHealthChat make sure to say hi, introduce yourself & tell us where you're tweeting from! https://t.co/ARsiT25PoW |
 | Jamie Roger @JamieRoger8 Jamie from @salemoaks and a #patientleader who loves what @wegohealth has been up to lately! Tweeting from beautiful CT! I’m looking forward to all of the other patient leaders who will be attending #2019ggsummit #WEGOHealthChat |
| Social Health Network @socialhealthnet But before we get started, let's get some housekeeping things out of the way! To help organize the chat, questions will be labeled Q1, Q2, Q3, etc & answers should be labeled A1, A2, A3, etc by you!#WEGOHealthChat |
 | Inspire @InspireIsHealth RT @wegohealth: Hello everyone and welcome to the September #WEGOHealthChat! This month, we're joined by special guest @gabehoward29 to discuss the moral, ethical, and professional obligations of being a *paid* #PatientLeader. https://t.co/1AOVxqMwBf |
 | sick lately, words bad (check 📌 for discord info) @bennessb Joining #wegohealthchat today! Hi, I'm Brianne. I live in Western Massachusetts & I interview folks with chronic illness for my podcast, No End In Sight. https://t.co/A2oZtVTOr1 |
| Jamie Roger @JamieRoger8 @justagoodlife @SalemOaks @ImDevPodcast @DavidFajgenbaum How are you Julie? Enjoying your week so far? #wegohealthchat |
 | Lisa Moran @plh4lisa @gabehoward29 Hello from Colorado. #wegohealthchat |
| Social Health Network @socialhealthnet Let's get to it! Q1. Do you believe you can make money performing advocacy work? Why or why not? #WEGOHealthChat https://t.co/n0uaDVK9LT |
| Jamie Roger @JamieRoger8 @bennessb I’ll have to give this podcast a listen! #WEGOHealthChat |
| Inspire @InspireIsHealth Hello to #WEGOHealthChat, John Novack from Inspire checking in (and mostly lurking). |
 | Patient Critical Co-op @PatientCritical PJ Mierau here, representing @PatientCritical Co-op patients and caregivers in Canada. Looking forward to the fireworks around this contentious topic! #WEGOHealthChat |
 | Parkinson's Humor @YumaBev @wegohealth @gabehoward29 Hello from sunny but hot Yuma Arizona #WEGOHealthChat |
 | Julie Croner @justagoodlife @teaminspire Hey John! Was just talking about you at lunch the other day with @stacy_hurt and @CancerBeGlammed #WEGOHealthChat |
| Jamie Roger @JamieRoger8 Not only do I believe that you can, I believe that you should. Whether you are associated with a company or not, your experience as a patient, or a patient leader, is valuable and beneficial to others. #wegohwalthchat |
| Jamie Roger @JamieRoger8 @plh4lisa @gabehoward29 Hi Lisa. #WEGOHealthChat |
 | Gabe Howard @gabehoward29 @teaminspire Don't lurk buddy! :) I love it when you hang out with me. #WEGOHealthChat! |
| Jamie Roger @JamieRoger8 @justagoodlife @SalemOaks @ImDevPodcast @DavidFajgenbaum Great so far, gearing up for #2019ggsummit next week. Tying up some loose ends with work and preparing for one of my favorite people’s wedding on Friday! Can’t complain. #WEGOHealthChat |
| Social Health Network @socialhealthnet Q1 continued.... Many times Patient Leaders face ethical dilemmas when accepting/requesting payment for their advocacy. Do you think it's ethical to accept or request payment for your advocacy work, even if it's out of passion? #WEGOHealthChat https://t.co/OJ1NpICmrB |
| sick lately, words bad (check 📌 for discord info) @bennessb Q1: I don't make any money from advocacy work, but I know that it's definitely possible. It does feel like you have to decide if you want to get sponsorship to speak to your own audience, or if you want to go out and find paying audiences. #wegohealthchat |
| Jamie Roger @JamieRoger8 @teaminspire How have you been John?? How was your summer? #WEGOHealthChat |
| Parkinson's Humor @YumaBev @wegohealth A1 I'd like to be reimbursed for my expenses, like gas, hotels, even copy fees #WEGOHealthChat |
 | Mary Fox @TheMaryFox RT @wegohealth: Hello everyone and welcome to the September #WEGOHealthChat! This month, we're joined by special guest @gabehoward29 to discuss the moral, ethical, and professional obligations of being a *paid* #PatientLeader. https://t.co/1AOVxqMwBf |
| Jamie Roger @JamieRoger8 I think it is ethical. You are giving your time to share knowledge that only you have. Also, passion is wonderful and that dedication shouldn’t override the importance and value in what you are doing. #WEGOHealthChat |
 | Amanda G @LAlupusLady A1 I believe that Advocacy is a passion and unless you are a “lobbyist” I do not foresee a way for patients who to advocate to get paid. #WEGOHealthChat |
| Inspire @InspireIsHealth RT @wegohealth: Let's get to it! Q1. Do you believe you can make money performing advocacy work? Why or why not? #WEGOHealthChat https://t.co/n0uaDVK9LT |
| Patient Critical Co-op @PatientCritical @JamieRoger8 A1: There are roles for advocates which should be paid, but I don't think it's all or nothing. Depends on if others are being paid (directly or indirectly) for their role. Sometimes volunteering is okay. Sometimes compensation should be mandatory. #wegohealthchat |
| Social Health Network @socialhealthnet RT @YumaBev: @wegohealth A1 I'd like to be reimbursed for my expenses, like gas, hotels, even copy fees #WEGOHealthChat |
 | Natalie 🦓 @_Nataliea @wegohealth A1. Some conditions, yes. When pharma has a vested interest. Things where pharma can’t make money... not so much. I gave up trying and curtailed my involvement because I realized there was... no reason for most to compensate me. #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @JamieRoger8: I think it is ethical. You are giving your time to share knowledge that only you have. Also, passion is wonderful and that dedication shouldn’t override the importance and value in what you are doing. #WEGOHealthChat |
| Jamie Roger @JamieRoger8 @PatientCritical I agree! #wegohealthchat |
| sick lately, words bad (check 📌 for discord info) @bennessb A1 cont'd: Advocacy is work. I don't think it's reasonable to expect that everybody will be willing or even able to do that without compensation. But it's also easy to see how some opportunities would not feel ethical. #wegohealthchat |
| Social Health Network @socialhealthnet RT @bennessb: A1 cont'd: Advocacy is work. I don't think it's reasonable to expect that everybody will be willing or even able to do that without compensation. But it's also easy to see how some opportunities would not feel ethical. #wegohealthchat |
| Amanda G @LAlupusLady A1 continued... I believe that when a patient shares at a healthcare conference that the Patient Leader should be compensated for expenses plus! #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @LAlupusLady: A1 continued... I believe that when a patient shares at a healthcare conference that the Patient Leader should be compensated for expenses plus! #WEGOHealthChat |
 | Ross @Rossco006 @wegohealth Hey all Ross here! No I’m not from down south but up north in Saskatchewan, Canada. #WEGOHealthChat |
| Social Health Network @socialhealthnet Q2. Is it possible to be a caring *and* paid Patient Leader -- or are they mutually exclusive? #WEGOHealthChat https://t.co/7X4fq4lmku |
 | AfternoonNapper @AfternoonNapper RT @wegohealth: Q1 continued.... Many times Patient Leaders face ethical dilemmas when accepting/requesting payment for their advocacy. Do you think it's ethical to accept or request payment for your advocacy work, even if it's out of passion? #WEGOHealthChat https://t.co/OJ1NpICmrB |
| Inspire @InspireIsHealth RT @wegohealth: Q2. Is it possible to be a caring *and* paid Patient Leader -- or are they mutually exclusive? #WEGOHealthChat https://t.co/7X4fq4lmku |
| AfternoonNapper @AfternoonNapper RT @wegohealth: Hello everyone and welcome to the September #WEGOHealthChat! This month, we're joined by special guest @gabehoward29 to discuss the moral, ethical, and professional obligations of being a *paid* #PatientLeader. https://t.co/1AOVxqMwBf |
| Patient Critical Co-op @PatientCritical Disclosure: As Managing Director of @PatientCritical, a not-for-profit patient-owned & steered advocacy & education organization I take no money for my advocacy. Patient Critical also accepts no money from any government biz or lobby group. #wegohealthchat |
| Natalie 🦓 @_Nataliea @wegohealth A2. I spent TON of blood/sweat/tears to creating a nonprofit patient org social media & design presence w/minimal pay. I loved it, and would totally craft a career out of it, except minor things like a liveable SF Bay salary, retirement, health insurance... #WEGOHealthChat |
| Lisa Moran @plh4lisa @wegohealth A2 it's possible to be both. Getting paid doesn't mean you don't care. Getting paid is the bonus for advocating g. #wegohealthchat |
| Ross @Rossco006 @justagoodlife @wegohealth How goes it Julie! Happy to finally get to a chat. #WEGOHealthChat |
 | Rachel Kate Hiles🥄🦓 ♿ @ChronicOutreach A1. Yes, absolutely. Multiple #PatientLeaders have been kind enough to talk about how they got started. Shout out to: @justagoodlife and @BarbyIngle And let’s not forget the Advocate Hub (my personal link: https://t.co/4XnORD2q1W) |
| Amanda G @LAlupusLady I hope and believe that Patients should get paid for sharing their experience and perspective but educating companies who happily pay for HCPs to share yet do not find patients to have the same value. #WEGOHealthChat |
| Social Health Network @socialhealthnet Q2 continued... What do you feel like is the biggest difference between volunteering and being paid as a Patient Leader? #WEGOHealthChat https://t.co/7vN33xxsOK |
 | Carly by Nature @SynceNerd_Carli A1: Absolutely. Time and labor of advocates isn't and shouldn't be free, but rather valued. The insights we provide are worthy of proper compensation. Especially when most of the people whose brains get "picked" are disabled and/or have little to no income. #WEGOHealthChat |
 | Stacy Hurt (she/her)🌻 @stacy_hurt A1. Yes. Like starting any other career, you have to pay your dues. I volunteered for five years across CRC advocacy orgs before asking for payment for speaking/consulting. But I certainly feel that now I’ve earned the right to be paid for my time #WEGOHealthChat |
| sick lately, words bad (check 📌 for discord info) @bennessb A2: Of course it's possible to care and get paid. I think again, it's important to remember that advocacy is a form of emotional labor. You can care about people in your community while setting boundaries about when you are advocating and when you are resting. #wegohealthchat |
 | Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba A1 Ethics goes to intent IMHO. It does take resources and time to function in the role of advocate. While I don't charge for my services to peds clients (or parents), older clients insist on paying me. I would hope that advocates never overcharge, if charging. #wegohealthchat |
| Rachel Kate Hiles🥄🦓 ♿ @ChronicOutreach A1. Yes, absolutely. Multiple #PatientLeaders have been kind enough to talk about how they got started. Shout out to: @justagoodlife and @BarbyIngle And let’s not forget the Advocate Hub (my personal link: https://t.co/4XnORD2q1W) #WEGOHealthChat |
 | Alan Brewington @abrewi3010 A2 You get paid for your time/story, you are a patient leader to raise the quality of life. #WEGOHealthChat |
| Lisa Moran @plh4lisa @PatientCritical That is ethical for a non profit. I think it's different when we are talking individuals. #wegohealthchat |
| Parkinson's Humor @YumaBev @wegohealth A2 Absolutely yes. I've been paid to travel halfway across USA to speak at a conference. WHY?? Because they knew I was a caring patient leader because they read my blog & my book. The tax implications caused a LOT of extra time tho #WEGOHealthChat |
| Inspire @InspireIsHealth RT @abrewi3010: A2 You get paid for your time/story, you are a patient leader to raise the quality of life. #WEGOHealthChat |
| Ross @Rossco006 @wegohealth I’ll be sitting in on the chat but currently having some testing done at the hospital. #WEGOHealthChat |
| Amanda G @LAlupusLady A2 when my passions collide 1) sharing my patient experience 2) raising awareness to create empathy AND they pay me for the privilege that is a “win” #WEGOHealthChat |
| sick lately, words bad (check 📌 for discord info) @bennessb A2 cont'd: I know it doesn't always map this way, but I think the difference *should* have to do with your goals. Volunteer advocacy should be fulfilling for you first. Paid advocacy should bring measurable value to your client/employer first. #wegohealthchat |
| Carly by Nature @SynceNerd_Carli A1: Most Orgs & Companies that approach the patients are compensated. It is only right that the advocates themselves be justly compensated. And said orgs should be disclosing when they are compensated for making connections between patients and companies. #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @YumaBev: @wegohealth A2 Absolutely yes. I've been paid to travel halfway across USA to speak at a conference. WHY?? Because they knew I was a caring patient leader because they read my blog & my book. The tax implications caused a LOT of extra time tho #WEGOHealthChat |
| Patient Critical Co-op @PatientCritical @wegohealth Whether patients are paid or not when contributing to for-pay or not-for-profit schemes isn’t as important to me as the bigger question of: Will your participation make a difference or be tokenistic? Will you be paid & ignored, or volunteer to make a difference? #wegohealthchat |
| Social Health Network @socialhealthnet RT @SynceNerd_Carli: A1: A1: Absolutely. Time and labor of advocates isn't and shouldn't be free, but rather valued. The insights we provide are worthy of proper compensation. Especially when most of the people whose brains get "picked" are disabled and/or have little to no income. #WEGOHealthChat |
| Stacy Hurt (she/her)🌻 @stacy_hurt A2. I care A TON and I get paid for my time, knowledge, expertise, and experience, similar to my oncologist #WEGOHealthChat |
 | 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @SynceNerd_Carli: A1: A1: Absolutely. Time and labor of advocates isn't and shouldn't be free, but rather valued. The insights we provide are worthy of proper compensation. Especially when most of the people whose brains get "picked" are disabled and/or have little to no income. #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @SynceNerd_Carli: A1: A1: Most Orgs & Companies that approach the patients are compensated. It is only right that the advocates themselves be justly compensated. And said orgs should be disclosing when they are compensated for making connections between patients and companies. #WEGOHealthChat |
 | Caring For Lupus @CaringForLupus RT @SynceNerd_Carli: A1: A1: Absolutely. Time and labor of advocates isn't and shouldn't be free, but rather valued. The insights we provide are worthy of proper compensation. Especially when most of the people whose brains get "picked" are disabled and/or have little to no income. #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @stacy_hurt: A2. I care A TON and I get paid for my time, knowledge, expertise, and experience, similar to my oncologist #WEGOHealthChat |
| Parkinson's Humor @YumaBev @LAlupusLady I agree with Amanda, most patients would rather hear from another patient, than a HCP who bores you with big words and slides that are too technical. But companies like to pay the HCPs and not us #WEGOHealthChat |
| Amanda G @LAlupusLady A2 In my experience, staff treats volunteers and consultants differently. Kindness is essential for all but there is a “respect” when you get paid for your work. #WEGOHealthChat |
| Social Health Network @socialhealthnet Q3. When it comes to making money as a Patient Leader, are you striving for a full-time career in advocacy or are you focused on accepting opportunities as they arise and fit? #WEGOHealthChat https://t.co/LKZfczAVwo |
| Amanda G @LAlupusLady RT @YumaBev: @LAlupusLady I agree with Amanda, most patients would rather hear from another patient, than a HCP who bores you with big words and slides that are too technical. But companies like to pay the HCPs and not us #WEGOHealthChat |
 | Patient Commando @PatientCommando Jumping in late from Toronto on this topic close to my heart. Co-authored paper on the topic along with 3 other patient leaders @TO_dpr @seastarbatita & Kimberly strain #WEGOHealthChat https://t.co/Ll697GWwv3 |
| Inspire @InspireIsHealth RT @wegohealth: Q3. When it comes to making money as a Patient Leader, are you striving for a full-time career in advocacy or are you focused on accepting opportunities as they arise and fit? #WEGOHealthChat https://t.co/LKZfczAVwo |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 Speak on it! #WEGOHealthChat |
| Patient Critical Co-op @PatientCritical @plh4lisa I believe we all deserve compensation, but know many strong advocates who have had to walk away from paid advocacy when it became obvious they were being ignored or used as a mascot. #wegohealthchat |
| Social Health Network @socialhealthnet This is a tremendous resource. If you've never taken a moment to read this, make sure you do! #WEGOHealthChat #BCSM |
| Lisa Moran @plh4lisa @Xtel007 I've had travel expenses reimbursed. Does anyone consider that being paid? I don't. #wegohealthchat |
| Patient Commando @PatientCommando Often wonder, is there anyone else in healthcare faced with an ethical dilemma when it comes to getting paid for their expertise and experience? Or are patients the only ones? #WEGOHealthChat |
| sick lately, words bad (check 📌 for discord info) @bennessb A3 I would love to make money from my advocacy, by translating what that I've learned from patient interviews into useful info for practitioners & insurers. But I'm more focused on building work that I can do sustainably without burning out than being full time. #WEGOHealthChat |
| Amanda G @LAlupusLady A3 ideally I strive to get paid for my work as an advocate and Patient Leader full-time. Yet the reality is I search for opportunities that will be willing to compensate me for my experience, time and perspective. #WEGOHealthChat |
 | Annette McKinnon @anetto RT @PatientCommando: Often wonder, is there anyone else in healthcare faced with an ethical dilemma when it comes to getting paid for their expertise and experience? Or are patients the only ones? #WEGOHealthChat |
 | Liza B @itsthebunk @justagoodlife Hey Julie!! Thank you so much! I am well! How are YOU? Hugs! #WEGOHealthChat |
| Liza B @itsthebunk RT @wegohealth: This is a tremendous resource. If you've never taken a moment to read this, make sure you do! #WEGOHealthChat #BCSM |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba A3 I don't strive to be a full-time advocate; I couldn't afford that. My current profession allows me the opportunity to serve parents of chronically-ill children and to give away my professional insights for free in advocacy. #wegohealthchat |
| Stacy Hurt (she/her)🌻 @stacy_hurt Q2. I believe ability to translate experience with a disease state to others in a meaningful, relatable way differentiates a volunteer from someone who is compensated as a leader in their field #WEGOHealthChat |
| Amanda G @LAlupusLady @justagoodlife @gabehoward29 He is not alone... Let’s change that! #WEGOHealthChat |
| Lisa Moran @plh4lisa @wegohealth A3. I take it as it comes for the time being but would love to be paid to advocate fulltime. #wegohealthchat |
| Patient Critical Co-op @PatientCritical @plh4lisa I believe everyone working for a for-profit org deserves to be compensated. That doesn’t always happen. We have to make people aware this is work that deserves compensation. Until we do-we can’t refuse to fix problems we have the skills or trust to fix. #wegohealthchat |
| Annette McKinnon @anetto A3 I’m not focussed on the money but it’s a matter of principle. When everyone else around the table is being paid, I feel that my opinion is less valued by my volunteer status. #WEGOHealthChat |
 | Kristina Wolfe @tunaturns @wegohealth A1: I believe we SHOULD. We’ve all been fighting this uphill battle for years though. Right now, can’t we help one another advocate for this and can’t that continue the loud cadence to make this a need? @_OurOdyssey_ #Wegohealthchat #staywoke #loudertogether |
| Carly by Nature @SynceNerd_Carli I've experienced this and am approached with these asks often. And that is simply wrong. We shouldn't have to fight for fair compensation. And it's completely predatory that we are not deemed worthy to be paid for our contributions. #WEGOHealthChat |
| Liza B @itsthebunk RT @PatientCommando: Often wonder, is there anyone else in healthcare faced with an ethical dilemma when it comes to getting paid for their expertise and experience? Or are patients the only ones? #WEGOHealthChat |
| Liza B @itsthebunk RT @plh4lisa: @Xtel007 I've had travel expenses reimbursed. Does anyone consider that being paid? I don't. #wegohealthchat |
| Julie Croner @justagoodlife @itsthebunk I'm great! Can't complain at all. Nice to see your name pop up!! <3 #WEGOHealthChat |
| Ross @Rossco006 @PatientCritical @JamieRoger8 I agree! I think there are times that pay is alright and then other times where volunteer is. I think it also is dependant on the roll or position you are taking. #WEGOHealthChat |
| Patient Commando @PatientCommando @TO_dpr @seastarbatita |
| Carly by Nature @SynceNerd_Carli This part. Reimbursement for expenses paid is not compensation for time and labor. Period. #WEGOHealthChat |
 | Janet Kennedy @GetSocialHealth Excellent! I'll read more when #WEGOHealthChat is over. Thanks for sharing @itsthebunk FYI @BookwalterLisa |
| Amanda G @LAlupusLady RT @anetto: A3 I’m not focussed on the money but it’s a matter of principle. When everyone else around the table is being paid, I feel that my opinion is less valued by my volunteer status. #WEGOHealthChat |
| Annette McKinnon @anetto RT @PatientCommando: Jumping in late from Toronto on this topic close to my heart. Co-authored paper on the topic along with 3 other patient leaders @TO_dpr @seastarbatita & Kimberly strain #WEGOHealthChat https://t.co/Ll697GWwv3 |
| Liza B @itsthebunk RT @GetSocialHealth: Excellent! I'll read more when #WEGOHealthChat is over. Thanks for sharing @itsthebunk FYI @BookwalterLisa |
| Liza B @itsthebunk @GetSocialHealth @BookwalterLisa Hi Janet! Thank you! #WEGOHealthChat |
| Amanda G @LAlupusLady RT @scrufton73: |
| Social Health Network @socialhealthnet We couldn't agree more Candace! #WEGOHealthChat |
| Lisa Moran @plh4lisa @itsthebunk @Xtel007 You bring up a good point. Not only did I not get paid no be on an advisory board, I lost money after paying self employment taxes. #wegohealthchat |
| Annette McKinnon @anetto @PatientCommando @TO_dpr @seastarbatita Sometimes it depends on who is paying you. What are their motives? Are you being paid to be a #TokenPatient? Are you expected to advance their marketing and branding? Do they only want a story with maximum pathos? #WegoHealthChat |
| Carly by Nature @SynceNerd_Carli A2: Volunteering is something I offer, on my own accord, to do for free. #WEGOHealthChat |
| Social Health Network @socialhealthnet Let's look a bit more at the structure compensation. Q4. How do you define "making money" as a Patient Leader? Is it covered travel expenses to an event or is it actually receiving a paycheck for your time and service? #WEGOHealthChat https://t.co/9FmxoIT7ze |
| Patient Critical Co-op @PatientCritical Where advocacy at conferences is involved, compensation is a thorny issue. How many of you have been invited to a #patientsincluded conference that won’t honor the ‘pay in advance’ clause? Intentional or accidentally, that’s financial profiling/gatekeeping #wegohealthchat |
| 💜⚽🇭🇹♊ Xtel Bond @Xtel007 @plh4lisa It's not. But it's also the minimum they SHOULD do. #WEGOHealthChat |
| Julie Croner @justagoodlife RT @PatientCritical: Where advocacy at conferences is involved, compensation is a thorny issue. How many of you have been invited to a #patientsincluded conference that won’t honor the ‘pay in advance’ clause? Intentional or accidentally, that’s financial profiling/gatekeeping #wegohealthchat |
| Rachel Kate Hiles🥄🦓 ♿ @ChronicOutreach A1 Cont. Passion is a major part of advocacy work, so, yes, I think it’s ethical to accept payment for it. I can’t speak from personal experience yet, so I’m interested in seeing the responses. #WEGOHealthChat |
| Annette McKinnon @anetto @justagoodlife Good thanks. Still here in Toronto. Sorry for no intro #WegoHealthChat Was on phone with a "volunteer opportunity" |
| sick lately, words bad (check 📌 for discord info) @bennessb A4: I like that this has basically been covered already. Travel reimbursement is not getting paid! But lots of people like to tell you that it is when it's offered! #WEGOHealthChat |
| Liza B @itsthebunk RT @plh4lisa: @itsthebunk @Xtel007 You bring up a good point. Not only did I not get paid no be on an advisory board, I lost money after paying self employment taxes. #wegohealthchat |
| Stacy Hurt (she/her)🌻 @stacy_hurt Q1. I had a ton of passion for my healthcare career pre-diagnosis that I was paid for. I have a ton of passion for my advocacy career post-diagnosis #WEGOHealthChat |
| Jamie Roger @JamieRoger8 RT @anetto: A3 I’m not focussed on the money but it’s a matter of principle. When everyone else around the table is being paid, I feel that my opinion is less valued by my volunteer status. #WEGOHealthChat |
| Lisa Moran @plh4lisa @wegohealth A4. Getting paid for time and service in addition to providing, not reimbursing, travel expenses. #wegohealthchat |
| Julie Croner @justagoodlife RT @ChronicOutreach: A1. Yes, absolutely. Multiple #PatientLeaders have been kind enough to talk about how they got started. Shout out to: @justagoodlife and @BarbyIngle And let’s not forget the Advocate Hub (my personal link: https://t.co/4XnORD2q1W) #WEGOHealthChat |
| Carly by Nature @SynceNerd_Carli A2: I think to answer this question we must first investigate who is considered a 'Patient Leader' vs. who isn't, and WHY? Also, who is making these determinations/designations? #WEGOHealthChat |
| Amanda G @LAlupusLady A4 being reimbursed is not “making money” - I believe that getting hired means they respect my time and experience by paying me for the work I provide. #WEGOHealthChat |
| Social Health Network @socialhealthnet RT @LAlupusLady: A4 being reimbursed is not “making money” - I believe that getting hired means they respect my time and experience by paying me for the work I provide. #WEGOHealthChat |
| Inspire @InspireIsHealth RT @wegohealth: Let's look a bit more at the structure compensation. Q4. How do you define "making money" as a Patient Leader? Is it covered travel expenses to an event or is it actually receiving a paycheck for your time and service? #WEGOHealthChat https://t.co/9FmxoIT7ze |
| Patient Critical Co-op @PatientCritical Making money is coming out ahead, not breaking even, as far as I am concerned. Bigger Q: should advocates become financially incentivized to provide care to the point they are more aligned with the paying org than their advocacy calling? #wegohealthchat |
| Social Health Network @socialhealthnet RT @stacy_hurt: Q1. I had a ton of passion for my healthcare career pre-diagnosis that I was paid for. I have a ton of passion for my advocacy career post-diagnosis #WEGOHealthChat |
| Carly by Nature @SynceNerd_Carli RT @anetto: A3 I’m not focussed on the money but it’s a matter of principle. When everyone else around the table is being paid, I feel that my opinion is less valued by my volunteer status. #WEGOHealthChat |
| Rachel Kate Hiles🥄🦓 ♿ @ChronicOutreach A2. In my mind, #PatientLeaders have the primary goal to better their communities and share the knowledge and resources they've gained. Whether being paid for their time or not, there's no question if they care. #WEGOHealthChat |
| sick lately, words bad (check 📌 for discord info) @bennessb A4 cont'd: But I think it's important to note that these aren't the only forms of compensation. A lot of advocates also make money through sponsorship & endorsements. A lot of advocates make some money from their audience with sites like patreon & ko-fi. #wegohealthchat |
| Social Health Network @socialhealthnet RT @bennessb: A4 cont'd: But I think it's important to note that these aren't the only forms of compensation. A lot of advocates also make money through sponsorship & endorsements. A lot of advocates make some money from their audience with sites like patreon & ko-fi. #wegohealthchat |
| Annette McKinnon @anetto A4 Having expenses reimbursed does not equal compensation. Even receiving an honorarium for speaking, with all the preparation you do, is nominal. I am on one committee where patients and caregivers are paid the same as the professionals in the room. That counts #WEGOHealthChat |
| Julie Croner @justagoodlife RT @ChronicOutreach: A2. In my mind, #PatientLeaders have the primary goal to better their communities and share the knowledge and resources they've gained. Whether being paid for their time or not, there's no question if they care. #WEGOHealthChat |
| Social Health Network @socialhealthnet Q4. continued How do you determine your fair market value, ie what you charge? #WEGOHealthChat https://t.co/opxUozol7t |
| Patient Critical Co-op @PatientCritical People shouldn’t use volunteers instead of paid staff. We also shouldn’t be hiring paid staff for roles that public healthcare (in Canada at least) should be paid to do -and are paid for in our taxes. That becomes a duplicate profit stream for institutions. #wegohealthchat |
| Patient Commando @PatientCommando Sorry I have to leave. Question to go: If ethics is related to bias then isn't it the mountains of cash we spend on drugs and other care needs the driver of bias rather than the pittance we might be paid for our involvement as representatives of lived experience? #WEGOHealthChat |
 | Breast Advocate @BreastAdvocate RT @wegohealth: This is a tremendous resource. If you've never taken a moment to read this, make sure you do! #WEGOHealthChat #BCSM |
| Stacy Hurt (she/her)🌻 @stacy_hurt A3. This one is tricky for me since I am full-time caregiver for my special needs/disabled son. He ALWAYS comes first, that’s why it has to be worth it for me to step away from him #WEGOHealthChat |
| Liza B @itsthebunk RT @anetto: @PatientCommando @TO_dpr @seastarbatita Sometimes it depends on who is paying you. What are their motives? Are you being paid to be a #TokenPatient? Are you expected to advance their marketing and branding? Do they only want a story with maximum pathos? #WegoHealthChat |
| Julie Croner @justagoodlife RT @scrufton73: |
| Carly by Nature @SynceNerd_Carli A3: It is important to me to only select the projects that align with my beliefs and vision. If it's not a good fit or doesn't positively serve the community, I walk away. No amount of money is worth me compromising my values and betraying my community. #WEGOHealthChat |
| Stacy Hurt (she/her)🌻 @stacy_hurt A4. In a word, BOTH! #WEGOHealthChat |
| Patient Critical Co-op @PatientCritical @PatientCommando Ethics can be related to bias, but not to volume: if we only drain a little from public resources (I have great concerns about paid navigators for eg) it’s still unethical even compared to volume over efficacy quandaries that cost much more. #wegohealthchat |
| Liza B @itsthebunk RT @PatientCommando: Jumping in late from Toronto on this topic close to my heart. Co-authored paper on the topic along with 3 other patient leaders @TO_dpr @seastarbatita & Kimberly strain #WEGOHealthChat https://t.co/Ll697GWwv3 |
| Annette McKinnon @anetto RT @PatientCommando: Sorry I have to leave. Question to go: Sorry I have to leave. Question to go: If ethics is related to bias then isn't it the mountains of cash we spend on drugs and other care needs the driver of bias rather than the pittance we might be paid for our involvement as representatives of lived experience? #WEGOHealthChat |
| Amanda G @LAlupusLady A4 continued. Determining the fair value includes travel, hotel, prep time and per diem. #WEGOHealthChat |
| Lisa Moran @plh4lisa @wegohealth A4. That's a good question. Do I want to be paid by the hour or a flat fee? How much is too much? Too little?#WEGOHealthChat |
| Ross @Rossco006 A3: I think that depends on a couple of factors but the main one being at what level you are functioning as a patient. For someone such as myself I am only able to accept opportunities as they arise and fit. My health doesn’t allow for a full-time career. #WEGOHealthChat |
| Patient Critical Co-op @PatientCritical RT @anetto: @PatientCommando @TO_dpr @seastarbatita Sometimes it depends on who is paying you. What are their motives? Are you being paid to be a #TokenPatient? Are you expected to advance their marketing and branding? Do they only want a story with maximum pathos? #WegoHealthChat |
| Patient Critical Co-op @PatientCritical @PatientCommando @patientcommando is 100% right to raise the issue of bias. We need to surface bias in compensation in healthcare fat more than we do today. #wegohealthchat |
| Social Health Network @socialhealthnet Requesting /receiving compensation shifts your role from volunteer to paid consultant/expert. Q5. What are some ethical obligations you may want to consider as a paid Patient Leader? #WEGOHealthChat https://t.co/nZqzo0eP7K |
| Rachel Kate Hiles🥄🦓 ♿ @ChronicOutreach A4 Cont. I have NO clue!! I'll be bookmarking this one though, so I can see what other #PatientLeaders have to say. #WEGOHealthChat |
| Social Health Network @socialhealthnet Q5 continued... What is okay to charge for and what isn't? Who is okay to charge and who isn't? #WEGOHealthChat https://t.co/IzJxVZiYcw |
 | Erica @CeliacBeast @wegohealth Yes!!! You can be both, but it’s all about choosing the right partnerships that make the most sense for your brand. #wegohealthchat |
| Patient Commando @PatientCommando RT @PatientCritical: @PatientCommando @patientcommando is 100% right to raise the issue of bias. We need to surface bias in compensation in healthcare fat more than we do today. #wegohealthchat |
| Patient Critical Co-op @PatientCritical In Canada there is a debate about paying ‘navigators’ to help some patients realize better care. To me this conjures images of high priced lawyers giving better care than public defendants and makes care less equitable. #wegohealthchat |
| Julie Croner @justagoodlife RT @scrufton73: |
 | MS Avenger ♿ @theMSAvenger @wegohealth A4 - I'm late to the party... I think it is both, for me. If I am travelling more than 10 miles, why should my time and energy not be fully compensated? #KnowYourWorth #WEGOHealthChat |
| Liza B @itsthebunk RT @SynceNerd_Carli: A3: A3: It is important to me to only select the projects that align with my beliefs and vision. If it's not a good fit or doesn't positively serve the community, I walk away. No amount of money is worth me compromising my values and betraying my community. #WEGOHealthChat |
| sick lately, words bad (check 📌 for discord info) @bennessb A5: I think a big ethical tangle can come with endorsing or working for healthcare companies while acknowledging that no protocol is perfect. I've never looked for podcast sponsors because I just don't know how to do this ethically right now. #wegohealthchat |
| Lisa Moran @plh4lisa @wegohealth A5. I would not be paid to make a statement or claim that I don't believe in or hasn't been a part of my own treatments. #WEGOHealthChat |
| Stacy Hurt (she/her)🌻 @stacy_hurt A4. It’s a work in progress depending on who is asking and my previous relationship with them (if any) #WEGOHealthChat |
| Social Health Network @socialhealthnet Q5 continued... What are some important professional obligations to uphold as a paid Patient Leader? #WEGOHealthChat https://t.co/gSPssHwwoQ |
| Amanda G @LAlupusLady A5 Ethical responsibility is to be professional and deliver more than you promised. One “paid” patient can lead to the company recognizing the value of Patient Leaders, so we you get the “gig” represent. #WEGOHealthChat |
 | Frank R. @SarcoidosisofLI @stacy_hurt @wegohealth #WEGOHealthChat Of course it is possible to be both. I have seen where it has been a problem but I feel it would get more patients involved. I feel that the money is needed to help the patients. It will also help them feel less stressed of how am I going to pay for this. |
| Stacy Hurt (she/her)🌻 @stacy_hurt A5. I think we need to consider if an opportunity will benefit the “greater good” of numerous patients and society- if so, then comp shouldn’t be the top priority- getting the story out there should be #WEGOHealthChat |
| Amanda G @LAlupusLady A5 Expenses should include meals, transportation but do not expect or seek reimbursement for alcohol or sightseeing... #WEGOHealthChat |
| Julie Croner @justagoodlife RT @scrufton73: |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba A5 Objectivity! When you're a paid advocate, there could be a tendency to tell the family/patient what they most want to hear. It's important to be forthright, report information free from passion or prejudice. #wegohealthchat |
| sick lately, words bad (check 📌 for discord info) @bennessb A5 cont'd: I also want to make sure that my work is not designed to profit from patients. If patients want to support my patreon, that's great! But if I'm going to charge, I want it to be somebody who I know can afford it (companies, conferences, etc). #wegohealthchat |
| Rachel Kate Hiles🥄🦓 ♿ @ChronicOutreach A3. For now, I’m focused on accepting opportunities as they arise and fit; however, my long-term goal is to achieve a full-time career in advocacy. #WEGOHealthChat |
| Social Health Network @socialhealthnet Q6. Is it ever appropriate to complete advocacy work for free? #WEGOHealthChat https://t.co/SdK2xgUyxC |
| Patient Critical Co-op @PatientCritical @bennessb We've been approached multiple times. We also can't reconcile taking the $ with remaining objective about our goals. Sometimes you can make $ doing the right thing & sometimes you can't. But weighing everything transparently to stay accountable is key #wegohealthchat |
| Patient Critical Co-op @PatientCritical The word ‘advocate’ suggests a cause and a belief. Volunteers work where they see a need & believe they are accomplishing good. If you aren’t being taken advantage of, don’t let anyone make you feel stupid for giving your time & energy to help. #wegohealthchat |
| Ross @Rossco006 @RareCandace Couldn’t agree more! There are aspects of our advocacy work that we can’t feel bad about being payed for. These are more than fair. #WEGOHealthChat |
| Lisa Moran @plh4lisa @wegohealth A5. Like any profession, uphold your end of the bargain, never cancel a contract or appearance. Emergencies are the exception. #WEGOHealthChat |
| Frank R. @SarcoidosisofLI @wegohealth #WEGOHealthChat A3. I will only pick the right speaking engagements. I would not take an engagement just for the money. I want my story to mean something. I also want my integrity to remain to what my goals and how I help my community. |
| Social Health Network @socialhealthnet If you're not sure how to disclose if you've been compensate or not, make sure to check out the @wegohealth FTC Course on the WEGO Health Platform #WEGOHealthChat https://t.co/H5UArYSU1k |
| Amanda G @LAlupusLady A6 sometimes sharing and advocacy provides value that is priceless and often “Karma pays bigger than a paycheck” #WEGOHealthChat |
 | Robin Farmanfarmaian @Robinff3 @wegohealth A6 Here's a handy chart that can help with what types of events will pay for speakers, including advocates. The key is to understand their business model, and how you add value. #WEGOhealthchat https://t.co/SVC3z42Czw |
| Social Health Network @socialhealthnet Q6 continued... How does it make you feel when you see others in your community completing advocacy work for free? #WEGOHealthChat https://t.co/bMzkBiYVf0 |
| Lisa Moran @plh4lisa @wegohealth A6. Yes, many successful efforts and campaigns have started with a grassroots volunteer based foundation. #WEGOHealthChat |
| Amanda G @LAlupusLady RT @wegohealth: If you're not sure how to disclose if you've been compensate or not, make sure to check out the @wegohealth FTC Course on the WEGO Health Platform #WEGOHealthChat https://t.co/H5UArYSU1k |
| Social Health Network @socialhealthnet This is a resource that all Patient Leaders should hold on to. Thank you @Robinff3 for sharing! #WEGOHealthChat |
| sick lately, words bad (check 📌 for discord info) @bennessb @PatientCritical Yes, definitely! I don't think this is irreconcilable for everyone, it depends on your work and your mission and whatnot. But it would feel really inauthentic for me since a big part of my work is acknowledging how personal symptom management is. #wegohealthchat |
| Social Health Network @socialhealthnet Whew, that hour went quickly! We have a few more moments, so let's begin to wrap up. Use CT to share with us any closing thoughts you have from today's chat. #WEGOHealthChat |
| Patient Critical Co-op @PatientCritical A trusted presence IS costly. We have been asked by national orgs how we produce, create, curate create, host our content! Myself & co-op members volunteer career's worth of skill. We could do more-but all of us have to draw a line at how much we can afford. #wegohealthchat |
| Ross @Rossco006 @anetto @PatientCommando @TO_dpr @seastarbatita Great points Annette! I really feel that this is what we need to look at in determining if payment is for the right reasons! #WEGOHealthChat |
| Stacy Hurt (she/her)🌻 @stacy_hurt A5. To value the important role of non-profit organizations in promoting awareness and education for a disease state and to not step on their toes with the service you provide #WEGOHealthChat |
| sick lately, words bad (check 📌 for discord info) @bennessb A6: I think it's totally appropriate to work for free if the work is personally fulfilling and you know the audience can't afford your rate and nobody else is making money off of your work without your full understanding & consent. #WEGOHealthChat |
| Frank R. @SarcoidosisofLI @wegohealth #WEGOHealthChat A4. I believe transportation and hotel should definitely be covered. I also think food should be covered. Now when it comes to any extra money, the payee should take in affect that the patient does have a harder time getting to places and also stress about travel |
| Lisa Moran @plh4lisa @wegohealth A6. I haven't thought of it before. I guess I thought everyone was a volunteer unless they were working with #pharma #WEGOHealthChat |
| MS Avenger ♿ @theMSAvenger @wegohealth A6 - I think that is a personal decision and there is no wrong or right answer. #WEGOHealthChat |
| Julie Croner @justagoodlife RT @plh4lisa: @wegohealth A6. I haven't thought of it before. I guess I thought everyone was a volunteer unless they were working with #pharma #WEGOHealthChat |
| Social Health Network @socialhealthnet Thank you to everyone who came to #WEGOHealthChat today! So great to hear what you're up to & be apart of a great idea exchange! If you'd like to do this more often, be sure to join our private FB group, available only to Network members! https://t.co/BISsizArcA |
| Amanda G @LAlupusLady CT Get ready for next week as @wegohealth will be having multiple #WEGOHealthChat (s) and announcing the 2019 #WEGOHealthAwards winners! https://t.co/qtGFOnBUB8 |
| Ross @Rossco006 @justagoodlife Yes! Yes! Yes! This was what I wanted to say. Great point! #WEGOHealthChat |
| Amanda G @LAlupusLady RT @wegohealth: Thank you to everyone who came to #WEGOHealthChat today! So great to hear what you're up to & be apart of a great idea exchange! If you'd like to do this more often, be sure to join our private FB group, available only to Network members! https://t.co/BISsizArcA |
| Liza B @itsthebunk RT @Robinff3: @wegohealth A6 Here's a handy chart that can help with what types of events will pay for speakers, including advocates. The key is to understand their business model, and how you add value. #WEGOhealthchat https://t.co/SVC3z42Czw |
| Patient Critical Co-op @PatientCritical So true! There are some who attempt to make money in ways that take away from ethical, ‘fair trade’ advocacy. Everyone deserves compensation for good work—but don’t trade on what good volunteers and advocates have built to help others so you can make a profit’ #wegohealthchat |
| Social Health Network @socialhealthnet Next week we'll have a #WEGOHealthChat at 1pm ET on Wednesday the 18th, Thursday the 19th and Friday the 20th to help us celebrate the #WEGOHealthAwards! Make sure to come back and join in the fun #WEGOHealthChat |
| Liza B @itsthebunk RT @wegohealth: This is a resource that all Patient Leaders should hold on to. Thank you @Robinff3 for sharing! #WEGOHealthChat |
| MS Avenger ♿ @theMSAvenger @wegohealth CT - I'm volunteering right now... I don't really care what other patient leaders choose to do. It doesn't affect me, my information has value. #WEGOHealthChat https://t.co/9vrrAaroxZ |
 | Lelainia Lloyd (She/Her) ♿️🥌🎙✍️🦄 @tatterededge RT @anetto: A4 Having expenses reimbursed does not equal compensation. Even receiving an honorarium for speaking, with all the preparation you do, is nominal. I am on one committee where patients and caregivers are paid the same as the professionals in the room. That counts #WEGOHealthChat |
| Stacy Hurt (she/her)🌻 @stacy_hurt A6. Yes, when counseling individual patients who seek your advice on doctors, second opinions, treatment plans, genetic testing, etc. #WEGOHealthChat |
| Amanda G @LAlupusLady RT @wegohealth: Next week we'll have a #WEGOHealthChat at 1pm ET on Wednesday the 18th, Thursday the 19th and Friday the 20th to help us celebrate the #WEGOHealthAwards! Make sure to come back and join in the fun #WEGOHealthChat |
| Frank R. @SarcoidosisofLI @wegohealth #WEGOHealthChat A1 continued. It is ethical if you are doing it for the right reasons. It becomes unethical when you are taking the money and doing it just for that. You need to be able to hold up your end of the agreement. To be z patient leader is to have integrity. |
| Lelainia Lloyd (She/Her) ♿️🥌🎙✍️🦄 @tatterededge RT @PatientCommando: Jumping in late from Toronto on this topic close to my heart. Co-authored paper on the topic along with 3 other patient leaders @TO_dpr @seastarbatita & Kimberly strain #WEGOHealthChat https://t.co/Ll697GWwv3 |
| Lelainia Lloyd (She/Her) ♿️🥌🎙✍️🦄 @tatterededge RT @anetto: A3 I’m not focussed on the money but it’s a matter of principle. When everyone else around the table is being paid, I feel that my opinion is less valued by my volunteer status. #WEGOHealthChat |
| Patient Critical Co-op @PatientCritical We’re starting to see the emergence of high-quality patient compensation roles becoming valued in healthcare institutions. The key to staying on the right side of ethics and tokenism is the same as all relationships: #accountability #transparency #wegogealthchat #independence |
| Liza B @itsthebunk RT @wegohealth: Thank you to everyone who came to #WEGOHealthChat today! So great to hear what you're up to & be apart of a great idea exchange! If you'd like to do this more often, be sure to join our private FB group, available only to Network members! https://t.co/BISsizArcA |
| Robin Farmanfarmaian @Robinff3 RT @wegohealth: This is a resource that all Patient Leaders should hold on to. Thank you @Robinff3 for sharing! #WEGOHealthChat |
| Liza B @itsthebunk RT @stacy_hurt: A6. Yes, when counseling individual patients who seek your advice on doctors, second opinions, treatment plans, genetic testing, etc. #WEGOHealthChat |
| Social Health Network @socialhealthnet Don't forget, we have #wegohealthchat the second Tuesday of every month at 1pm ET. Mark it on your calendar 📆! |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba A6 When it comes to advocacy, get in where you fit in, I say. Healthcare needs advocates & pt leaders. Charge, don't charge, it matters less than the authentic time put in. Use your competencies to improve the lives & care journies of others. It's that simple #wegohealthchat https://t.co/QbX2tn2WTn |
| Lelainia Lloyd (She/Her) ♿️🥌🎙✍️🦄 @tatterededge RT @PatientCommando: Often wonder, is there anyone else in healthcare faced with an ethical dilemma when it comes to getting paid for their expertise and experience? Or are patients the only ones? #WEGOHealthChat |
| Rachel Kate Hiles🥄🦓 ♿ @ChronicOutreach @wegohealth - I am an organized person...or so I keep telling myself. But, man, it's a tough break having #lowvision and participating in a super long #WEGOHealthChat #chronicillnesshumor #spooniehumor 👓😂 https://t.co/gVz22VkYtN |
| Ross @Rossco006 @stacy_hurt This is why I don’t think there’s a cut and dry answer for this question. I think we need to look at what our priorities are. Making money? Raising Awareness? Being a Caregiver? #WEGOHealthChat |
| Frank R. @SarcoidosisofLI @wegohealth A6. Yes there are times to complete advocacy for free. If you are trying to help a new organization out, if you feel that the event is going to be something that will have long term commitments to your cause that you can work together in the future. #WEGOHealthChat |
| Liza B @itsthebunk RT @scrufton73: |
| Frank R. @SarcoidosisofLI RT @wegohealth: This is a resource that all Patient Leaders should hold on to. Thank you @Robinff3 for sharing! #WEGOHealthChat |
| Rachel Kate Hiles🥄🦓 ♿ @ChronicOutreach @gabehoward29 @wegohealth Thanks, will do. Awesome #WEGOHealthChat today! |
#WEGOHealthChat content from Twitter.