#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.

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Hey everyone, for the next hour I'll be a guest on #patientchat! Come join us!
Patient Chat @patientchat
Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients.
Patient Chat @patientchat
We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat
Patient Chat @patientchat
I’m Kara from @power4patients and I’m excited to be moderating the last #patientchat of 2018!
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@JamieRoger8 @SalemOaks Thank you! I'm glad to be here :) #patientchat
Patient Chat @patientchat
Guest @fireflyrn84 is Kim Hartmann, an RN turned full time patient, advocate, and blogger living with several chronic illnesses. You can see what she’s up to at https://t.co/rzJjmr5Kge #patientchat
Jamie Roger @JamieRoger8
Jamie from CT and @SalemOaks Tuning in from my local library so I could have a bit of change in scenery for the day. Thanks @fireflyrn84 for being the guest host today. FOrgot the hashtag #patientchat
Maya Northen Augelli @mayanorthen
Maya from Philly here. Mental health, IBS, and Migraine advocate, & founder of Spread Hope Project. #patientchat
Patient Chat @patientchat
Please continue with intros and welcomes. I’ll share a couple “ground rules" :) #patientchat
HealthSparq @HealthSparq
Looking forward to a great #patientchat today w/ @fireflyrn! Come on over and join us #WTFIx #HITsm #hcldr!
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Hi everyone, it's such an honor to be here today with you. @patient4patients, Kara has done a great job introducing me, so I'll take a bow and say thanks! #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
Greetings! Casey Quinlan here, loud #data #citizenscience #healthpolicy geek HQed in Richmond VA. But I'm bad, I'm nationwide. I'm also global 😎 #PatientChat
Patient Chat @patientchat
Today's #patientchat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs & history.
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@mayanorthen Great to have you here! #patientchat
@K_SalemOaks
Kevin from CT here. Looking forward to #patientchat today Hopefully the crowd is growing. #patientchat #pinksocks @SalemOaks @WestchesterBio @S4PM @Savvy_Coop @WEGOHealth @2DD
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@HealthSparq @fireflyrn Hey there! I'm looking forward to spending some time with you! It's been a while #patientchat
Patient Chat @patientchat
You can view our Chat Etiquette & Guidelines, along with past chat transcripts, at https://t.co/99wmvHL0S2 #patientchat
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@MightyCasey Hi Casey! #patientchat
Laurie Reed @LReedptadvocate
Laurie here joining from vacation but eager to hear the discussion #patientchat
Patient Chat @patientchat
Today's #patientchat topic is A Year in Review: Looking back on 2018 and Ahead to 2019 https://t.co/71CyoklrGa https://t.co/YnpZkcG14F
Jamie Roger @JamieRoger8
@LReedsbooks Where are you vacationing Laurie? #patientchat
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@K_SalemOaks @SalemOaks @WestchesterBio @S4PM @savvy_coop @wegohealth @2DD Imagine seeing you here :) it's going to be a great chat! #patientchat
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@LReedsbooks Glad to see you! #patientchat
Patient Chat @patientchat
I will introduce new Topics with T1, T2...Please include corresponding T# at front of every answer - hard to remember but helpful #patientchat
Rie Lopez, MPH (she/her) @RieOfLetters
Rie from chilly MA. Health educator, #mentalhealth and #ChronicPain advocate. Splendiferous patient and public health nerd. #patientchat https://t.co/orvBtcjyDP
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@RieOfLetters Hi honey! Love the kittten! #patientchat
Patient Chat @patientchat
Time to start our topics. Here comes T1: #patientchat
Heather McCullen @H_SalemOaks
Hi #patientchat Heather from outside of Ann Arbor, representing @SalemOaks along with @JamieRoger8 and @K_SalemOaks
Patient Chat @patientchat
T1: For your personal Empowered Patient Year in Review, what are you proud of? What are your goals for 2019? #patientchat https://t.co/Ngh5jZRBHI
Jamie Roger @JamieRoger8
@H_SalemOaks @SalemOaks @K_SalemOaks The whole gang is here @SalemOaks #patientchat
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T1.1: I got involved with an amazing org that has allowed me to thrive on #advocacy and help others with #dysautonomia. I got to lobby on Capitol Hill, which was something I’ll never take for granted; talk about empowering! #patientchat
Laurie Reed @LReedptadvocate
@JamieRoger8 A little slice of paradise #patientchat https://t.co/QJnvI9nnia
Inspire @InspireIsHealth
Hello to #patientchat and Happy Holidays. John Novack here from Inspire.
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@LReedsbooks @JamieRoger8 gorgeous #patientchat
Rie Lopez, MPH (she/her) @RieOfLetters
@fireflyrn84 Hi Kim! You know I had to bring something cute with me. 😊 #patientchat
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@RieOfLetters of course :) #patientchat
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@teaminspire Hey John! Long time no see! #patientchat
Jamie Roger @JamieRoger8
I am proud of the growth that I have made through my experience as a #patient and how that has affected my career. My goal for 2019 is to continue #empowering others through #storytelling and #dialogue #listen to those around you and spread #compassion #patientchat
Rie Lopez, MPH (she/her) @RieOfLetters
@LReedsbooks @JamieRoger8 Wow! Gorgeous!! #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
@fireflyrn84 #patientchat https://t.co/IvXfYGMps6
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Compassion and listening are two of the most valuable skills we can possess. #patientchat
Jamie Roger @JamieRoger8
@LReedsbooks SO BEAUTIFUL, and I'm soooo jelly. We just planned a trip to El Salvador in January and I can't wait to feel the hot sun again. #patientchat #vacation #selfcare
Jamie Roger @JamieRoger8
@teaminspire Hey John, How have you been? ANything fun and exciting? Happy Holidays #patientchat
@K_SalemOaks
A1 Finishing our first full year @SalemOaks has been tremendous. Tripled the staff, quadrupled the talent. Meeting hundreds of new people with the same drive to improve healthcare. #patientchat #pinksocks @SalemOaks @S4PM @Savvy_Coop @WEGOHealth @2DDPodcast
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T1.2 I got to serve on the digital advisory board for planning #WTFix. It was an amazing experience to be a part of something so special. I have networked with many people and I hope that 2019 has something similar in store. #patientchat
Jamie Roger @JamieRoger8
@fireflyrn84 Truth. #patientchat
Jamie Roger @JamieRoger8
RT @K_SalemOaks: A1 Finishing our first full year @SalemOaks has been tremendous. Tripled the staff, quadrupled the talent. Meeting hun…
Heather McCullen @H_SalemOaks
A1: 2018 has been quite a year! I went from being really lost in my career to finding new purpose with @SalemOaks #patientchat
Patient Empowerment Network @power4patients
T1: We’re proud of our continued partnerships with other advocacy groups and healthcare organizations because we believe that these types of collabs benefit everyone #patientchat
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@H_SalemOaks @SalemOaks We've met in a lot of chats this year. I think you are doing great things, Heather! #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
A1: At my age, I'll count "still above ground" as a 2018 highlight! Srsly tho, was delighted I got to attend [REDACTED USER] this year. Also happy I got @hilarious_is (my podcast) up and running. #PatientChat
Maya Northen Augelli @mayanorthen
T1: This year I worked on really putting myself out there, which is tough for me b/c of anxiety/deprsession. I submitted articles to more sites, became a #MightyEvents host, joined @savvy_coop , became a #webewarrior @helathbeme, & a #breakthroughcrew member. #patientchat
@K_SalemOaks
A1 Goals for 2019. Broaden our reach to more patients who can benefit from our services. Develop a kick-butt drug development curriculum for @WestchestBio. Grow enough to start hiring patients. #patientchat #pinksocks @SalemOaks @S4PM @Savvy_Coop @WEGOHealth @2DD
Laurie Reed @LReedptadvocate
@patientchat T1 - I'm learning how to harness the power of social media to create dialogue and foster community. #patientchat
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Yep, @savvy_coop and @savvypuppets all the way #patientchat
Maya Northen Augelli @mayanorthen
@fireflyrn84 I should know this, but what is #WTFix. I see it a lot, but haven't actually learned what it is. Also, this is awesome, congrats! #patientchat
Jamie Roger @JamieRoger8
RT @fireflyrn84: Yep, @savvy_coop and @savvypuppets all the way #patientchat https://t.co/g8ZSt0bMnL
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T1.3 2019 is going to be the year of #patientadvocacy. It all has been up to this point but there is much more on the horizon that we, as both leaders & #patients can accomplish. #Healthcare is changing, as will advocacy. #patientchat
@K_SalemOaks
RT @mayanorthen: T1: This year I worked on really putting myself out there, which is tough for me b/c of anxiety/deprsession. I submitted a…
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@K_SalemOaks @SalemOaks @S4PM @savvy_coop @wegohealth @2DD Hiring patients would be HUGE! #patientchat
Melissa VanHouten @melissarvh
T1 Proud of my #Gastroparesis group/community members for continuing to raise their voices and share their stories in the hopes of bringing about improvements in care. 2019 goals? #DCGreen2019 - #CureGP #PatientChat
Patient Chat @patientchat
RT @fireflyrn84: T1.3 2019 is going to be the year of #patientadvocacy. It all has been up to this point but there is much more on the hori…
HealthSparq @HealthSparq
T1. We're thrilled about a second successful year of #WTFix and our work bringing #patientvoices to various conferences this year - including #AHIPcx this week! #patientchat
Patient Empowerment Network @power4patients
RT @fireflyrn84: T1.3 2019 is going to be the year of #patientadvocacy. It all has been up to this point but there is much more on the hori…
Jamie Roger @JamieRoger8
RT @fireflyrn84: T1.3 2019 is going to be the year of #patientadvocacy. It all has been up to this point but there is much more on the hori…
Maya Northen Augelli @mayanorthen
@outeresting @savvy_coop Thank you! It was really tough. Still is, but working on it. #patientchat
Rie Lopez, MPH (she/her) @RieOfLetters
T1: I am proud of the steps I took in my advocacy work. I wrote some articles, said yes to some interviews, and participated in a panel on #mentalhealth at the @S4PM conference. #patientchat
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#WTFix is "people kicking the hell out of healthcare" ordinary people finding a way around obstacles using imagination and creativity. Succeeding despite the system #patientchat
Jamie Roger @JamieRoger8
@fireflyrn84 @K_SalemOaks @SalemOaks @S4PM @savvy_coop @wegohealth @2DD It is definitely something we have discussed and are hopeful about doing. #patientchat #employeewellbeing
Heather McCullen @H_SalemOaks
A1.2) I spent a lot of this year exploring the landscape and my new role. In 2019 my goal is to be a bit more focused in. my efforts. #patientchat
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@melissarvh You do so much for #GP, it's a great asset! #patientchat
Patient Empowerment Network @power4patients
@HealthSparq We were so psyched to participate this year and can’t wait until the next one! #PatientChat
@K_SalemOaks
We've built it into our vision. As we have the need for more horsepower, we think there are may talented people in the patient and caregiver world. (We need revenue first.) #patientchat #pinksocks @SalemOaks @WestchesterBio @S4PM @Savvy_Coop @WEGOHealth @2DDPodcast
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@HealthSparq that's awesome! #patientchat
Melissa VanHouten @melissarvh
@fireflyrn84 Thank you kindly, Ms. Kimberly! #PatientChat
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@RieOfLetters @S4PM You have done a lot of wonderful things this year, my dear! #patientchat
HealthSparq @HealthSparq
T1. Goals in 2019 include continuing to find & amplify #patient stories, & getting them in front of those that can make change in #healthcare & most need to hear them. We'd also like to continue working to find more partners in these efforts! #patientchat #WTFix
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@melissarvh Anytime! #patientchat
Maya Northen Augelli @mayanorthen
T1.2 For 2019, I'm hoping to take #SpreadHopeProject to the next level. I have an idea for a Spread Hope Road trip to meet & help promote fellow patient advocates that I'm hoping I might be brave enough to do. :-) #patientchat
Rie Lopez, MPH (she/her) @RieOfLetters
T1 (b): Goal setting for 2019 is going to include more work in #mentalhealth. I'm also working on a book. Yikes! #patientchat
Patient Chat @patientchat
T2: Is there something you wish you did differently this year? Do you have plans to try something new in 2019? #patientchat
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@JamieRoger8 @K_SalemOaks @SalemOaks @S4PM @savvy_coop @wegohealth @2DD I would be very interested in following this #patientchat
Maya Northen Augelli @mayanorthen
@fireflyrn84 YESSSSS!! I want to be part of this somehow! #WTFix #patientchat
Patient Chat @patientchat
T2: Is there something you wish you did differently this year? Do you have plans to try something new in 2019? #patientchat https://t.co/osJzKKLyDY
Patient Empowerment Network @power4patients
T1.2: Our proudest accomplishment is also the focus of our goal for 2019 and that’s to reach more patients and care partners with our Digital Sherpa Program. @CancerSupportHQ and @MoffittNews have been better partners than we could ever have hoped to have! #patientchat
Inspire @InspireIsHealth
RT @patientchat: T2: Is there something you wish you did differently this year? Do you have plans to try something new in 2019? #patientchat
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@mayanorthen That would be amazing #patientchat
Maya Northen Augelli @mayanorthen
@H_SalemOaks @SalemOaks That's amazing. I'd love to hear any tips or tricks (off chat perhaps lol) because I'm experiencing this right now (advocacy not full time career as of now). #patientchat
Patient Empowerment Network @power4patients
RT @patientchat: T2: Is there something you wish you did differently this year? Do you have plans to try something new in 2019? #patientchat
Heather McCullen @H_SalemOaks
A2: I should have quit my old job sooner #patientchat
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@mayanorthen It is really a great concept. I have blogged both years for #WTFix and it's a great experience #patientchat
HealthSparq @HealthSparq
@fireflyrn84 ❤️ #WTFix so well put!
@K_SalemOaks
A2: No regrets for 2018. 2019 is full of promise as our shared vision broadens @SalemOaks. New? We are sponsoring conferences. #patientsaspartners #patientexpsym HOPE TO SEE YOU ALL THERE! #patientchat #pinksocks @SalemOaks @WestchesterBio @S4PM @Savvy_Coop @WEGOHealth @2DD
Rie Lopez, MPH (she/her) @RieOfLetters
@fireflyrn84 @S4PM Thank you! Just trying to keep up with you! #patientchat https://t.co/RkxA6wmJXu
Patient Empowerment Network @power4patients
RT @patientchat: T2: Is there something you wish you did differently this year? Do you have plans to try something new in 2019? #patientcha
Jamie Roger @JamieRoger8
@RieOfLetters Awesome! #patientchat
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@HealthSparq Aww thanks! You were the ones that recruited such a talented team. It was an honor! #patientchat
Maya Northen Augelli @mayanorthen
@fireflyrn84 I really want to do it. I'm trying to combine my travel biz experience, advocacy experience, and love of helping people. This seems like it would fit. #patientchat
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A book, a book! #patientchat
HealthSparq @HealthSparq
@mayanorthen @fireflyrn84 We'd love to have you! We're currently looking for more #patientstories to highlight, if you'd like to share yours through our #WTFix platform in blog or video format! We'll DM you & we can chat! 🙌
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T2.1 I wish I had won the lottery, maybe a New Year’s resolution will be to buy a lottery ticket a week 😊. All joking aside, I wish that I had slowed down to soak up the good things. We only live once; we need to make it count. #patientchat
Melissa VanHouten @melissarvh
T2 Always things I wish I had done differently, better, and more efficiently. Hindsight is 20/20. Mostly, I wish I could do more. #PatientChat
Jamie Roger @JamieRoger8
I think it was more something I learned to do towards the end of the year and want to continue. #embrace my #story and accept what I have experienced, what I have learned, and how I can help others. continue to #connect with the world that I live in. #patientchat
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@K_SalemOaks @SalemOaks @WestchesterBio @S4PM @savvy_coop @wegohealth @2DD Definitely want to hear more! #patientchat
Melissa VanHouten @melissarvh
RT @K_SalemOaks: A2: No regrets for 2018. 2019 is full of promise as our shared vision broadens @SalemOaks. New? We are sponsoring confer…
HealthSparq @HealthSparq
@mayanorthen This is awesome! #patientchat
Patient Empowerment Network @power4patients
@fireflyrn84 Agreed, on all points! #patientchat
Maya Northen Augelli @mayanorthen
T2: I wish I'd started kicking my own butt into gear a little earlier in the year. Also, I wish I had more confidence in my efforts, but that's kind of the ongoing anxiety/depression struggle. #patientchat
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@melissarvh I think we all wish we could do more #patientchat
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Perfectly said #patientchat
Jamie Roger @JamieRoger8
@H_SalemOaks Good thing you checked your linkedin and saw that my career path had changed. #patientchat
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T2.2 2019 is hopefully going to be a year of better health. The way this year has gone, the bar doesn’t have to be set very high to hit that goal. The bar is pretty much on the ground at this point, so anywhere up is great! #patientchat
Jamie Roger @JamieRoger8
RT @K_SalemOaks: A2: No regrets for 2018. 2019 is full of promise as our shared vision broadens @SalemOaks. New? We are sponsoring confer…
Maya Northen Augelli @mayanorthen
This 1000%. Also, when you're leading the way, as we all are in advocacy, there will always be tweaks. They help us grow and learn what to do next. @melissarvh You're doing amazing things IMO. :-) #patientchat
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@HealthSparq thank you ;) #patientchat
Jamie Roger @JamieRoger8
@mayanorthen @fireflyrn84 That sounds perfect for you then! #patientchat
Maya Northen Augelli @mayanorthen
@HealthSparq Thank you! Dream big, right? #patientchat
Rie Lopez, MPH (she/her) @RieOfLetters
T2: I wish I had practiced more #selfcare. It's easy to get caught up in in the work you love, but if you are not taking care of yourself first (especially when you have chronic illness), you can end up worn out quickly. #patientchat
HealthSparq @HealthSparq
@fireflyrn84 Sending you so many positive thoughts for a much healthier 2019! 2018 has kinda been a beast for ya! ❤️❤️❤️ #patientchat
Maya Northen Augelli @mayanorthen
@HealthSparq @fireflyrn84 YES!! I'd love to hear more! #WTFix #Patientchat
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T2.3 Currently I’m serving as the chair of a council that is working on trying to get a longitudinal health record formed. There is a lot of work to be done before it is accomplished, so 2019 has a lot to live up to. #patientchat
Patient Empowerment Network @power4patients
T2: Agree with Kevin @SalemOaks, no regrets! But rather focusing on the future! We're going to be launching a bunch of new programs in 2019 focused on improving #healthliteracy and #patientempowerment #carepartnersupport so stay tuned! #patientchat
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@HealthSparq an enormous beast! #patientchat
Melissa VanHouten @melissarvh
@mayanorthen You are very kind, Ms. Maya. Thank you! I think you are pretty fabulous yourself. 😊 #PatientChat
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can't wait to see/hear #patientchat
Maya Northen Augelli @mayanorthen
@JamieRoger8 @fireflyrn84 It really is. It's the money/time off factor that I think trips me up. But I'm working on how to rectify that (slowly). #patientchat
Patient Chat @patientchat
T3: Which healthcare trends were important to you in 2018? What trends would you like to see gain momentum? #patientchat https://t.co/qFTo9F3Mfr
Maya Northen Augelli @mayanorthen
@melissarvh 😊😊Thank you! #patientchat
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I'm also collaborating with someone on a book. Also need to publish my e-book of the first year of blogs! #patientchat
@K_SalemOaks
Yay #healthliteracy Also working with @sarahkrug1 on something on this for middle and high school students (That's right Sarah - I didn't forget) #patientchat #pinksocks @SalemOaks @WestchesterBio @S4PM @Savvy_Coop @WEGOHealth @2DD
Maya Northen Augelli @mayanorthen
@GinaMcGalliard @patientchat This is amazing!! #patientchat
Maya Northen Augelli @mayanorthen
Same! #patientchat
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T3.1 A top trend that is in the news every day is the #opioidepidemic. This is something that we do have a problem with. At the same time, many #chronicpain patients are being caught in the middle, with limited options. #patientchat
Patient Empowerment Network @power4patients
@RieOfLetters So true! Self care was a personal goal of mine this year and I have definitely benefited from it. It wasn't always easy to follow through one but I really benefited when I did #patientchat
HealthSparq @HealthSparq
@fireflyrn84 Ohhhh! So exciting! Can't wait to hear more! #patientchat
Jamie Roger @JamieRoger8
@mayanorthen @fireflyrn84 find a slow and steady income that will continue while you are traveling, as long as you KNOW that there will be some money coming in, the thought of just going won't be as stressful. Find something you can do on the road, or even a sponsor for the trip #patientchat
HealthSparq @HealthSparq
RT @patientchat: T3: Which healthcare trends were important to you in 2018? What trends would you like to see gain momentum? #patientchat h…
@K_SalemOaks
A2: Participatory Medicine. We need to amplify the movement of enlightened patients and healthcare providers to working together. #patientchat #pinksocks @SalemOaks @WestchesterBio @S4PM @Savvy_Coop @WEGOHealth @2DD
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@HealthSparq You'll be hearing soon! #patientchat
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@GinaMcGalliard I find writing so therapeutic, it has gotten me through a lot of bad days. It's cathartic. #patientchat
Rie Lopez, MPH (she/her) @RieOfLetters
You heard it here first, so now I am locked in. #AmWriting #patientchat
Angela Radcliffe @theaimomma
RT @MightyCasey: Greetings! Casey Quinlan here, loud #data #citizenscience #healthpolicy geek HQed in Richmond VA. But I'm bad, I'm nationw…
Jamie Roger @JamieRoger8
@fireflyrn84 @abrewi3010 has a thing or two to say about this. I agree, they are two VERY different struggles but are regarding the same medication. It is something that needs to be worked on in 2019. #patientchat
Maya Northen Augelli @mayanorthen
@fireflyrn84 Ha yes on the lottery piece. If I did that, the road trip would be a go for sure! LOL. Also working on the soaking up the good things day by day though. :-) #patientchat
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T3.2 We need to acknowledge that #patients are people too and so much more than a diagnosis or number. We all deserve to have a good #qualityoflife and that needs to become a priority across the board. #patientchat
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@JamieRoger8 @abrewi3010 absolutely! #patientchat
Jamie Roger @JamieRoger8
RT @fireflyrn84: T3.2 We need to acknowledge that #patients are people too and so much more than a diagnosis or number. We all deserve to h…
Rie Lopez, MPH (she/her) @RieOfLetters
RT @power4patients: @RieOfLetters So true! Self care was a personal goal of mine this year and I have definitely benefited from it. It wasn…
@K_SalemOaks
A3 Patient-led biopharmaceutical R&D. The patient voice is powerful in more places than the doctor's office. More @PhRMA members need to step up. #patientchat #pinksocks @SalemOaks @WestchesterBio @S4PM @Savvy_Coop @WEGOHealth @2DD
Heather McCullen @H_SalemOaks
Just remembered another one for A1: Convince @K_SalemOaks to do a regular podcast. #patientchat
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@mayanorthen one day at a time is always the way to go #patientchat
Maya Northen Augelli @mayanorthen
@JamieRoger8 @fireflyrn84 Also, I clearly wear a lot of random hats interest/career wise. :-) #patientchat
Melissa VanHouten @melissarvh
T3 Well, I happen to love #HealthTech so I am looking forward to new and innovative patient tools. #PatientChat
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T3.3 #Medicalrecord access and #PHR are going to be gaining a lot more momentum in 2019. It’s something long overdue and is a right. We have already paid for the medical care, we shouldn’t have to pay to obtain our records. #patientchat
Laurie Reed @LReedptadvocate
T3 - I believe there are greater efforts to take back healthcare (direct primary care, etc...). Such efforts, while not perfect are taking steps in the right direction for people to get the healthcare they need and deserve.#patientchat
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You and me both! #patientchat
@K_SalemOaks
Where's the put-on-the-spot button? #patientchat
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Great point #patientchat
Jamie Roger @JamieRoger8
@mayanorthen @fireflyrn84 What if you map out a journey (roughly) and talk to yoga studios in those areas to see if you can teach a class or two while you are there? [REDACTED USER] help her out! #sponsors #sponsorship #travel #patient #patientchat
Patient Empowerment Network @power4patients
T3: I'm happy to see more of a focus on educating patients and care partners about the need for and the importance of #genomic testing, and potentially retesting, in this age of #precisionmedicine #patientchat
Rie Lopez, MPH (she/her) @RieOfLetters
@power4patients That's awesome! I'm glad you noticed the difference. Looking forward to having us both enjoying plenty of self care in 2019! #patientchat
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You kind of got thrown into the ring, Kevin! #patientchat
Maya Northen Augelli @mayanorthen
T3: Love seeing increasing patient involvement each step (or at least many more) steps of the way in the healthcare process. It has a long way to go, but I think we're making progress. #patientchat
Melissa VanHouten @melissarvh
RT @fireflyrn84: T3.3 #Medicalrecord access and #PHR are going to be gaining a lot more momentum in 2019. It’s something long overdue and i…
Jamie Roger @JamieRoger8
@fireflyrn84 He's used to that. #patientchat
Patient Chat @patientchat
T4: We want to hear from you! What topics are you passionate about and would like to hear more of in 2019? #patientchat https://t.co/pUUpXT39Ro
Melissa VanHouten @melissarvh
RT @mayanorthen: T3: Love seeing increasing patient involvement each step (or at least many more) steps of the way in the healthcare proces…
Rie Lopez, MPH (she/her) @RieOfLetters
@JamieRoger8 @mayanorthen @fireflyrn84 [REDACTED USER] That sounds fantastic! Love it! #patientchat
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Absolutely! #genomic medicine is the wave and #precisionmedicine is how we are truly going to treat patients appropriately #patientchat
IFFGD @IFFGD
RT @fireflyrn84: T1.3 2019 is going to be the year of #patientadvocacy. It all has been up to this point but there is much more on the hori…
IFFGD @IFFGD
RT @melissarvh: T1 Proud of my #Gastroparesis group/community members for continuing to raise their voices and share their stories in the h…
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T4.1 I personally enjoyed the chat where we all brought up our own topics and guided the discussion. It was a different experience, but all seemed to flow well. Maybe quarterly do something similar. #patientchat
Jamie Roger @JamieRoger8
@RieOfLetters @mayanorthen @fireflyrn84 [REDACTED USER] It would combine a few of her favorite interests, as well as a source of income. #teaching #yoga #patientempowerment #patients #travel #patientchat
Enlightening Results 💡 @GraceCordovano
Peeking in to say hello but need to put the phone away before the dr sees me 😬 #patientchat https://t.co/KKId6b6Okg
@
Amen to this! I believe I'm the poster child for forgetting #selfcare occasionally #patientchat
Maya Northen Augelli @mayanorthen
@JamieRoger8 @fireflyrn84 [REDACTED USER] Yeah, [REDACTED USER] help me out! I would love something like this. Thank you!! More brains together so much better than one (esp mine some days lol). :#patientchat
Jamie Roger @JamieRoger8
@fireflyrn84 I loved that one too! We kept it really focused but on topics we all enjoyed! #patientchat
Patient Empowerment Network @power4patients
@K_SalemOaks @PhRMA @SalemOaks @WestchesterBio @S4PM @savvy_coop @wegohealth @2DD Yes! Seeing the shift toward patient-led R&D has been one of the most rewarding and satisfying things I've seen in my career. Still a looooong way to go but the fact it's happening is amazing to witness and be a part of #patientchat
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@GraceCordovano Hi Grace! #patientchat
@
T4.2 Asking if people want to be guests is a fabulous idea! This has been a fun chat to prep for, especially with the holidays and getting ready to ring in the New Year soon. #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
A2: I dunno, I think every year I should be more aggressive about #FYPM aka getting PAID for my expertise vs. the all volunteer army protocol still prevalent for patient-side experts 🙄 #PatientChat
Heather McCullen @H_SalemOaks
RT @K_SalemOaks: A3 Patient-led biopharmaceutical R&D. The patient voice is powerful in more places than the doctor's office. More @PhRMA
Maya Northen Augelli @mayanorthen
@JamieRoger8 @RieOfLetters @fireflyrn84 [REDACTED USER] My yoga instructor knows people all over, and my sister is an instructor in WA (though that would be a long road trip lol), so I just have to connect the dots. Also, have to finish my certification! :-) #yoga #patientempowerment #roadtrip #patientchat
@
Totally agree! We're professional patients and don't get compensated for what we do. #patientchat
@K_SalemOaks
A4 See A3 below. Patient-led biopharmaceutical R&D. #patientchat #pinksocks @SalemOaks @WestchesterBio @S4PM @Savvy_Coop @WEGOHealth @2DD @globalgenes
Melissa VanHouten @melissarvh
T4 What healthcare topic am I NOT passionate about? Ha Ha! I would most like to see more of a focus on legislative changes & research funding for the #Gastroparesis community. More emphasis on conferences & collaboration among organizations as well. #PatientChat #CureGP
Jamie Roger @JamieRoger8
@mayanorthen @RieOfLetters @fireflyrn84 [REDACTED USER] #goals for 2019. Make it happen. Make the world your oyster! Roadtrips can be as long or short as you choose... Also on your journeys you can visit the best docs #patientchat
@
I agree 110%, more research for many illnesses #dysautonomia #gastroparesis #mastocytosis #MCAD #EDS there's a whole string that need more research [REDACTED USER] #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
A3: THIS ONE IS EASY. Excited to see emerging co-op model for patient #data control, including ECONOMIC dividend. @NebulaGenomics @hu_manityco are breakthrough players. #My31 #FYPMdata #PatientChat
Melissa VanHouten @melissarvh
RT @fireflyrn84: I agree 110%, more research for many illnesses #dysautonomia #gastroparesis #mastocytosis #MCAD #EDS there's a whole strin…
Maya Northen Augelli @mayanorthen
I was basically just typing this as well. "Passionate about everything" related to health/healthcare (and also just a lot in general). #patientchat
Alan Brewington @abrewi3010
@fireflyrn84 @JamieRoger8 Just got out of a meeting at work. Missing the fun! #patientchat
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@abrewi3010 @JamieRoger8 We miss you! #patientchat
Katarina Bot @amwritingbot
RT @RieOfLetters: You heard it here first, so now I am locked in. #AmWriting #patientchat https://t.co/uBcLWg67FZ
Maya Northen Augelli @mayanorthen
@JamieRoger8 @RieOfLetters @fireflyrn84 [REDACTED USER] Ha yes! Thank you! Goal: recorded. #patientchat
Rie Lopez, MPH (she/her) @RieOfLetters
T3: I saw a lot more discussion on generational #trauma and #ACEs. There is finally a lot more attention on diversity in #clinicaltrials. I feel we need a lot more attention focused on #mentalhealth and chronic illness. #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
A4: More patient-directed #clinicalresearch + #clinicaltrials participation, including research question and trial design. #citizenscience #countmein #allofus #PatientChat
@
This this this! #patientchat
Maya Northen Augelli @mayanorthen
Yes! To all of it. Of course I'm always a big yes to anything focused on #mentalhealth. #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
@fireflyrn84 Yeah, like we don't also like living indoors, eating from time to time, or ... PAYING FOR MEDICAL CARE. #patientchat #FYPM
@
@MightyCasey BINGO #patientchat
Patient Chat @patientchat
T5: How can we empower others and get more people involved? What can we do to foster collaboration? #patientchat https://t.co/FKjOTRa4Xf
Heather McCullen @H_SalemOaks
RT @MightyCasey: @fireflyrn84 Yeah, like we don't also like living indoors, eating from time to time, or ... PAYING FOR MEDICAL CARE. #pati
@
T5.1 We need to reach out, tag more organizations, take place in more chats…make #patientchat a staple on Twitter and let’s start trending on the newsfeeds!
Alan Brewington @abrewi3010
@fireflyrn84 @JamieRoger8 I miss you too! #patientchat
@
@abrewi3010 @JamieRoger8 aww #patientchat
Maya Northen Augelli @mayanorthen
YES! All of it. #patientchat
Rie Lopez, MPH (she/her) @RieOfLetters
@abrewi3010 @fireflyrn84 @JamieRoger8 We are decidedly more fun than meetings at work. ❤️ #patientchat
Patient Empowerment Network @power4patients
@RieOfLetters Speaking of diversity in #clinicaltrials, we produced a program on the topic in our Clinical Trial Mythbusters series. Check it out and let us know what you think because we'd like to continue to talk about it in a meaningful way: https://t.co/e4t0Sjx5J0 #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
A5: Look for opportunities to partner with communities in allied interest fields. IOW don't just play in your own condition community, find other communities interested in #research, or #datascience, join forces. #PatientChat
Patient Empowerment Network @power4patients
RT @patientchat: T5: How can we empower others and get more people involved? What can we do to foster collaboration? #patientchat https://t…
Maya Northen Augelli @mayanorthen
T5: I think a lot of it is increasing visibility. I continuously stumble on new chats, conferences, organizations. I'd love to have a more consolidated way to let other advocates know what's happening, how they can be involved, etc. #patientchat
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ooh! definitely will be checking it out #patientchat
@
T5.2 Collaboration comes by building trust and not being afraid of change. Take the leap that you have been holding onto, 2019 is our year! #patientchat
@K_SalemOaks
A5. Equip them. People need knowledge, skills, and confidence to do public speaking. Speaking out about our health is a-whole-nother challenge. We need a place to nurture new advocates. #patientchat #pinksocks @SalemOaks @WestchesterBio @S4PM @Savvy_Coop @WEGOHealth @2DD
@
@RieOfLetters @abrewi3010 @JamieRoger8 It doesn't take much to be more fun than meetings, but we are a lot more fun #patientchat
Laurie Reed @LReedptadvocate
T5 - It seems like there's already a lot of collaboration happening. Each of you are involved in many different patient organizations and are building community. #patientchat
Melissa VanHouten @melissarvh
T5 I think getting info out is key. I can do that fairly effectively on FB & Twitter, but there's a whole "real" world out there which seems more difficult 2reach. Including addtn'l disease-specific orgs in collaboration would be great. So much we all have in common. #PatientChat
Melissa VanHouten @melissarvh
RT @K_SalemOaks: A5. Equip them. People need knowledge, skills, and confidence to do public speaking. Speaking out about our health is a…
Alan Brewington @abrewi3010
@fireflyrn84 @RieOfLetters @JamieRoger8 I work in state government, I’ve had more fun at surgeries! #patientchat
@K_SalemOaks
A5 We need to break out of our twitter-bubble. How many of us are on their 2nd or 3rd TwC today? Where else can we go and spread the word? #patientchat #pinksocks @SalemOaks @WestchesterBio @S4PM @Savvy_Coop @WEGOHealth @2DD
Melissa VanHouten @melissarvh
RT @mayanorthen: T5: I think a lot of it is increasing visibility. I continuously stumble on new chats, conferences, organizations. I'd lov…
@
No flak here! You are spot on #patientchat
Rie Lopez, MPH (she/her) @RieOfLetters
T4: If you know me even a little, I cover a lot of ground. I'm passionate about everything relating to health/improving health outcomes for everyone. I breathe #publichealth and #mentalhealth. Policy, advocacy, research, patient care ... It's so exciting! #patientchat
Maya Northen Augelli @mayanorthen
@fireflyrn84 @RieOfLetters @abrewi3010 @JamieRoger8 Legit, we're building my whole 2019 goal plan/strategy and shouting out for sponsors over here. :-) Meetings def don't do that! #patientchat
Jamie Roger @JamieRoger8
@abrewi3010 @fireflyrn84 @RieOfLetters Come on, the FDA isn't that bad. HAHAH . How was your week? #patientchat
Heather McCullen @H_SalemOaks
RT @mayanorthen: @fireflyrn84 @RieOfLetters @abrewi3010 @JamieRoger8 Legit, we're building my whole 2019 goal plan/strategy and shouting ou…
Inspire @InspireIsHealth
RT @patientchat: T4: We want to hear from you! What topics are you passionate about and would like to hear more of in 2019? #patientchat ht…
Melissa VanHouten @melissarvh
I could not agree with this more! People are willing to help but they are sometimes easily intimidated & think they must possess a certain skill level or status to participate. This perception must change! #PatientChat
@
Everyone has great ideas today. This has been a great conversation, I can't believe we're starting to wind down already! #patientchat
@
Amen to this #patientchat
@K_SalemOaks
A5 Being relatively new, I have noticed this too. 'Celebrity' can be a powerful tool but can also be used to build barriers. We all need to remember the day the doctor said "I'm sorry but..." #patientchat #pinksocks @SalemOaks @WestchesterBio @S4PM @Savvy_Coop @WEGOHealth @2DD
Patient Empowerment Network @power4patients
T5: We need more collab b/w advocacy grps. None of us has all the answers & we're 100x better when we work together. Most importantly, it benefits patients & care partners so that, IMHO, should be enough to make it happen. It's my goal to make it happen more often. #patientchat
Jamie Roger @JamieRoger8
RT @K_SalemOaks: A5 Being relatively new, I have noticed this too. 'Celebrity' can be a powerful tool but can also be used to build barrie…
Alan Brewington @abrewi3010
@JamieRoger8 @fireflyrn84 @RieOfLetters I work for Medicaid. #patientchat
Patient Chat @patientchat
Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement. Start your tweet w/ CT: #patientchat
Jamie Roger @JamieRoger8
@abrewi3010 @fireflyrn84 @RieOfLetters Sorry, my bad... forgetful day. Just as fun #patientchat
@
Not more often; it needs to happen every. single. day. always #patientchat
Patient Empowerment Network @power4patients
RT @melissarvh: T5 I think getting info out is key. I can do that fairly effectively on FB & Twitter, but there's a whole "real" world out…
Patient Empowerment Network @power4patients
RT @fireflyrn84: T5.2 Collaboration comes by building trust and not being afraid of change. Take the leap that you have been holding onto,…
Rie Lopez, MPH (she/her) @RieOfLetters
@power4patients I bookmarked it so I can read it later. I'll let you know what I think. Thanks! 😊 #patientchat
@
@GinaMcGalliard It is absolutely about supporting each other. That's why we are all here! #patientchat
Maya Northen Augelli @mayanorthen
@melissarvh This is one of the reasons I want to try to get out "on the road" for 2019. It might not be big stuff or major collaboration, but I want to try to connect w/people & orgs offline too. #patientchat
Patient Empowerment Network @power4patients
RT @MightyCasey: A5: Look for opportunities to partner with communities in allied interest fields. IOW don't just play in your own conditio…
Patient Chat @patientchat
RT @power4patients: T5: We need more collab b/w advocacy grps. None of us has all the answers & we're 100x better when we work together. Mo…
@
CT: Thank you for the opportunity to allow me to be a guest today! It’s been an honor and privilege. This has been a great chat as always and am looking forward to many, many more! #patientchat
Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey
@K_SalemOaks @SalemOaks @WestchesterBio @S4PM @savvy_coop @wegohealth @2DD Yup. Every day I remind myself, out loud, "it's not about you." I'm in this for humanity, not myself. Which is patently obvious if you look at my balance sheet 😜😜 #patientchat
Jamie Roger @JamieRoger8
My closing thoughts for today, and 2018, don't give up. Don't lose sight of what your goals are and what you want to accomplish in the coming year. AND don't forget to practice #selfcare especially during the holiday season. HAPPY HOLIDAYS #patientchat
Rie Lopez, MPH (she/her) @RieOfLetters
RT @power4patients: T5: We need more collab b/w advocacy grps. None of us has all the answers & we're 100x better when we work together. Mo…
Jamie Roger @JamieRoger8
RT @mayanorthen: @melissarvh This is one of the reasons I want to try to get out "on the road" for 2019. It might not be big stuff or major…
Laurie Reed @LReedptadvocate
CT - I'm so impressed with the level of commitment among all of you to make change happen! #patientchat
@
My thoughts on advocacy are that we are forging a new path to discoveries that will leave a lasting legacy for generations to come. Many of us aren't going to see cures in our lifetime, but others certainly will who come after us. #patientchat
Inspire @InspireIsHealth
RT @patientchat: T5: How can we empower others and get more people involved? What can we do to foster collaboration? #patientchat https://t…
Patient Empowerment Network @power4patients
RT @fireflyrn84: My thoughts on advocacy are that we are forging a new path to discoveries that will leave a lasting legacy for generations…
Melissa VanHouten @melissarvh
Happy Holidays and best wishes for a beautiful 2019 to all! #PatientChat
@K_SalemOaks
CT May you all enjoy your holidays! Given today's chat, we all should rest up for a powerful 2019! #patientchat #pinksocks @SalemOaks @WestchesterBio @S4PM @Savvy_Coop @WEGOHealth @2DD
Maya Northen Augelli @mayanorthen
My CT for today: this has been one of the most inspiring & collaborative chats I've participated in recently. There is so much passion and so many great ideas among our community. Let's keep up the momentum for 2019. #patientchat
@
@melissarvh Happy holidays to you too, Melissa #patientchat
Patient Chat @patientchat
RT @K_SalemOaks: CT May you all enjoy your holidays! Given today's chat, we all should rest up for a powerful 2019! #patientchat #pinks
Patient Chat @patientchat
#patientchat is your community. Thanks for helping make it great. Reach out to @power4patients or @patientchat anytime
@
@K_SalemOaks @SalemOaks @WestchesterBio @S4PM @savvy_coop @wegohealth @2DD Agreed, we have a lot of work to do in 2019 #patientchat
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@mayanorthen So glad that you could join us #patientchat
Jamie Roger @JamieRoger8
#sponsors #roadtrip #yoga #PatientAdvocacy #patientchat
Rie Lopez, MPH (she/her) @RieOfLetters
CT: I am so glad that I made it to this chat. I feel like 2019 is going to be really great for patient advocacy. And if you are new or seasoned, feel free to holler at me any time. We're all in this together!! 😊#patientchat
Patient Chat @patientchat
Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15min past the hour.
Patient Chat @patientchat
Thank you all for a great year of #patientchat There will be no chat on 12/28 due to the holidays. We hope to see you again in 2019!
Maya Northen Augelli @mayanorthen
Couldn't agree more, on all of it! My twitter (or however you reach me) door is always open! #patientchat
@
Thank you for having me. #patientchat
Patient Chat @patientchat
If you have a topic in mind for a future #patientchat or would like to be a guest host in 2019, please let us know! :)
Patient Empowerment Network @power4patients
CT: We're grateful for this #patientchat community & each and every one of you. You're a constant source of ideas, inspiration & motivation for the work we do to empower patients & care partners. Wishing you Happy Holidays and a peaceful, joyful & health-ful New Year xo
Rie Lopez, MPH (she/her) @RieOfLetters
@GinaMcGalliard @fireflyrn84 I agree with you completely, @GinaMcGalliard! Thank you for coming out and saying this. #patientchat
Patient Chat @patientchat
Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat
Maya Northen Augelli @mayanorthen
You all, that #patientchat was so interactive, I forgot to eat my lunch. Not great for #selfcare, but awesome for #patientadvocacy motivation!
DarshanTalks Podcast @DarshanTalks
#healthcare #pharmacist #patientcentricity #patientchat #hcsm #patientsinvolved #patientengagement #pharmacy https://t.co/XBLErIY498
Rie Lopez, MPH (she/her) @RieOfLetters
@power4patients Wishing you the very same- from now and throughout 2019! 🎉 #patientchat
🌟 Sherry Reynolds ✨ Person-Centered Health @Cascadia
@fireflyrn84 @power4patients Many many of us grew up doing #patientadvocacy My mom did it in women’s health. I did it in the AIDS community. Each “round” is a generation apart so people often don’t know or learn the lessons #patientchat
Patient Empowerment Network @power4patients
Join #patientchat today at 1pmET as we round out 2018's Empowered Patient Chats with a look back on 2018 and look ahead to 2019 w/special guest @fireflyrn84 https://t.co/IywF6Pnrki https://t.co/8US0CG3tt6
#patientchat content from Twitter.