#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | 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. |
 | Christina Lizaso @btrfly12 RT @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 |
 | J.B. et al., 🔭𓆏 🌊 @negronjb RT @patientchat: Join us in a few minutes for the Empowered #patientchat. Info/Topics: Join us in a few minutes for the Empowered #patientchat. Info/Topics: https://t.co/pCG1FZRbx0 |
| J.B. et al., 🔭𓆏 🌊 @negronjb RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients. |
| J.B. et al., 🔭𓆏 🌊 @negronjb RT @patientchat: New to tweet chats? Follow hashtag #patientchat and include it in every tweet during the next hour. You can engage with others on the topic. |
| J.B. et al., 🔭𓆏 🌊 @negronjb RT @patientchat: Here’s a handy article on participating in tweet chats: Here’s a handy article on participating in tweet chats: https://t.co/5JyoTGvZvH #patientchat |
| Patient Chat @patientchat Guest moderating today's #patientchat is Christina @btrfly12 Please note that Notifications/DMs will be checked and followed up on by chat host @power4patients in the days following the chat. |
 | Carly Flumer (she/her) @carlyflumer Hello, I’m Carly! I’m a #thyroidcancer survivor coming up on my 2 year mark! #patientchat |
 | Laurie Reed @LReedptadvocate @patientchat Hi! Laurie here from beautiful, sunny Oregon. #patientchat |
 | Heather 🇺🇸 @ZHeatherChamp Hello! I’m Heather, living with Cowden Syndrome and Lhermitte-duclos Disease. #btsm #pten #patientchat |
| Christina Lizaso @btrfly12 @carlyflumer Congratulations Carly. Always nice to tweet along with you. #patientchat |
| Christina Lizaso @btrfly12 Hi all :) I'm passionate about community engagement and health. I'm on the @power4patients digital advisory board and I'm often found at #gyncsm #nsgcgenepool #breakthroughcrew #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @patientchat @btrfly12 @power4patients Yay! #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
 | Alan Brewington @abrewi3010 Alan here. Hopefully I can talk today, stupid #rheumatoidarthritis made me take yesterday off due to pain. Playing #rheum catch up at work today #patientchat |
| Patient Chat @patientchat Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines, along with past chat transcripts, at https://t.co/5D9FyEMfSH #patientchat |
 | Lisa Sutton @Lisaksutton87 Hello there everyone. I'm living with hypothyroidism and hypertension #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is Medication Management I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful :) |
| Patient Chat @patientchat Here's the link with all the topics we'll cover. Topic 1 (T1:) coming up... https://t.co/pCG1FZRbx0 #patientchat |
 | Inspire @InspireIsHealth @patientchat Hello to #patientchat, and Happy Friday, John Novack checking in from Inspire. |
 | Ross @Rossco006 @patientchat Ross here from Saskatchewan peaking in and out during the hour! #patientchat |
| Patient Chat @patientchat T1: Compliance? Adherence? Participation? What term for this topic resonates best with you, and why? #patientchat https://t.co/XQpeJrfVIW |
| Christina Lizaso @btrfly12 RT @patientchat: T1: T1: Compliance? Adherence? Participation? What term for this topic resonates best with you, and why? #patientchat https://t.co/XQpeJrfVIW |
| Inspire @InspireIsHealth RT @patientchat: T1: T1: Compliance? Adherence? Participation? What term for this topic resonates best with you, and why? #patientchat https://t.co/XQpeJrfVIW |
| Heather 🇺🇸 @ZHeatherChamp A1: Participation. My docs are participating with me in my health management. #patientchat |
| Alan Brewington @abrewi3010 A1 all those terms are crap. Medication only works when doctors, patients, pharmacy work together. Those terms imply it’s my fault only if I don’t take my meds #patientchat |
| Carly Flumer (she/her) @carlyflumer T1: I like “adherence” and “compliance,” although I think the latter could have a harsher connotation. To me, “adherence” means you’re taking your medicine at the correct time and dose. But that also requires clear communication from the provider. #heathliteracy #patientchat |
| Christina Lizaso @btrfly12 T1: Found this nice piece by @HeartSisters discussing the issues and a suggestion of using the word "concordance" https://t.co/5oWVmkxLit #patientchat |
 | Melissa VanHouten @melissarvh I honestly do not like any of these terms because I do not think they convey that I am actually the leader in my own care. I particularly detest "compliance." #patientchat |
| Christina Lizaso @btrfly12 T1: The issue of "taking medications as prescribed" has a history of paternalistic terms AND attitude to go with it. Not sure we have a good patient-centered term. Adherence seems to be what industry folks call it when they discuss and study it. #patientchat |
 | Kimberly Amelia @fireflyrn84 Hi everyone, I’m going to attempt to try to get through at least part of this chat today. Just got home last night after 10 days in the hospital and am getting 10 hours of IVIg today then home to hook up to my TPN #patientchat |
| Christina Lizaso @btrfly12 RT @melissarvh: I honestly do not like any of these terms because I do not think they convey that I am actually the leader in my own care. I particularly detest "compliance." #patientchat |
| Alan Brewington @abrewi3010 RT @melissarvh: I honestly do not like any of these terms because I do not think they convey that I am actually the leader in my own care. I particularly detest "compliance." #patientchat |
| Christina Lizaso @btrfly12 RT @abrewi3010: A1 all those terms are crap. Medication only works when doctors, patients, pharmacy work together. Those terms imply it’s my fault only if I don’t take my meds #patientchat |
| Alan Brewington @abrewi3010 RT @btrfly12: T1: T1: The issue of "taking medications as prescribed" has a history of paternalistic terms AND attitude to go with it. Not sure we have a good patient-centered term. Adherence seems to be what industry folks call it when they discuss and study it. #patientchat |
| Heather 🇺🇸 @ZHeatherChamp A1a: Oops. I try to “adhere” to taking my meds as prescribed. I’m not perfect; I do my best. #patientchat |
| Christina Lizaso @btrfly12 @fireflyrn84 Good to see you even if only for a bit. Sending love and light your way. #patientchat |
| Kimberly Amelia @fireflyrn84 @teaminspire @patientchat Hi John! Long time no see #patientchat |
 | Sakinah Kaiser (She/Her) @themuslimhippie RT @abrewi3010: A1 all those terms are crap. Medication only works when doctors, patients, pharmacy work together. Those terms imply it’s my fault only if I don’t take my meds #patientchat |
| Sakinah Kaiser (She/Her) @themuslimhippie RT @melissarvh: I honestly do not like any of these terms because I do not think they convey that I am actually the leader in my own care. I particularly detest "compliance." #patientchat |
| Alan Brewington @abrewi3010 A1 medication is not a yes/no proposition. The price(s) alone are a huge access and determination of success. #patientchat |
| Kimberly Amelia @fireflyrn84 @Rossco006 @patientchat Hey buddy! #patientchat |
| Patient Chat @patientchat So along this thinking.. T2: What affect do "industry terms" (like Medication Adherence/Compliance) have when it comes to patient care? #patientchat https://t.co/6mkOIi1v9a |
| Laurie Reed @LReedptadvocate @patientchat T1 - Participation is a new one for me. It acknowledges the role of the patient in a 'more friendly', 'less formal' manner. Compliance is formal, has a whiff of 'legalese', as does adherence. Some may be confused by adherence whereas compliance is direct and clear. #patientchat |
| Kimberly Amelia @fireflyrn84 T1: participation resonates the most with me, no matter what is going on, participation is something that is needed by everyone. #patientchat |
| Alan Brewington @abrewi3010 A2 industry terms assign blame without taking any responsibility. #patientchat |
| Ross @Rossco006 @fireflyrn84 @patientchat I’m more or less just watching today’s chat because Dr’s and nurses keep coming through. #patientchat |
| Christina Lizaso @btrfly12 T2: It really is about what happens outside the 15min doctor's visit. How does what this HCP is telling me fit into my actual life and with my actual goals and realities. Be they financial or otherwise. The whole convo of Medication Adherence can be very backwards. #patientchat |
| Melissa VanHouten @melissarvh Language, terms, always convey something deeper-a sentiment, and attitude, or mindset. Many of these terms convey that industry still does not consider patients as partners or understand that patients do indeed direct their own care. Consider "patient activation." #patientchat |
| Kimberly Amelia @fireflyrn84 Okay my brain just turned into mush. I gave it the college try. Can’t hold my head up and think at the same time yet. Have a great rest of the chat! #patientchat |
| Christina Lizaso @btrfly12 @Rossco006 @fireflyrn84 @patientchat Hi Ross! Nice to be able to tweet at this time for #patientchat again and see familiar faces. |
 | Karen Knops MD @KMKnops RT @btrfly12: T1: T1: Found this nice piece by @HeartSisters discussing the issues and a suggestion of using the word "concordance" https://t.co/5oWVmkxLit #patientchat |
| Carly Flumer (she/her) @carlyflumer T2: As some have mentioned, the terms aren’t really patient-friendly, esp. compliance. The lay-friendliness could also come into question in terms of med management. Explaining the term in a few words may help the patient comprehension. Again, clear communication. 🔑#patientchat |
| Christina Lizaso @btrfly12 RT @melissarvh: Language, terms, always convey something deeper-a sentiment, and attitude, or mindset. Many of these terms convey that industry still does not consider patients as partners or understand that patients do indeed direct their own care. Consider "patient activation." #patientchat |
| Christina Lizaso @btrfly12 RT @abrewi3010: A2 industry terms assign blame without taking any responsibility. #patientchat |
| Christina Lizaso @btrfly12 RT @LReedsbooks: @patientchat T1 - Participation is a new one for me. It acknowledges the role of the patient in a 'more friendly', 'less formal' manner. Compliance is formal, has a whiff of 'legalese', as does adherence. Some may be confused by adherence whereas compliance is direct and clear. #patientchat |
| Christina Lizaso @btrfly12 RT @abrewi3010: A1 medication is not a yes/no proposition. The price(s) alone are a huge access and determination of success. #patientchat |
| Christina Lizaso @btrfly12 RT @carlyflumer: T2: T2: As some have mentioned, the terms aren’t really patient-friendly, esp. compliance. The lay-friendliness could also come into question in terms of med management. Explaining the term in a few words may help the patient comprehension. Again, clear communication. 🔑#patientchat |
| Laurie Reed @LReedptadvocate @patientchat T2 - These words can be strong trigger words for patients which can negatively impact patient care. And of course, none of these allow an understanding as to why there might be a lack of compliance or adherence. #patientchat |
| Alan Brewington @abrewi3010 A2 as a patient I need industry for my quality of life. Medication industry has tremendous power because of this. Blaming me does nothing but further us vs them battles. #patientchat |
| Patient Chat @patientchat Moving to Topic 3 (T3:)... #patientchat |
| Patient Chat @patientchat T3: Why do you think some patients do not take their medications as prescribed? What are some of the reasons for yourself or others? #patientchat https://t.co/v1opAKgPi2 |
 | Dr. Kelly Shanahan @stage4kelly T1. As someone who practiced medicine for 25 years I’m guilty of using “compliance” mainly in the pejorative “pt is non-compliant” way. Now that I’m a #metastaticbreastcancer pt I know better and would use plain language (“pt not taking meds because....”) #patientchat |
| Christina Lizaso @btrfly12 RT @stage4kelly: T1. As someone who practiced medicine for 25 years I’m guilty of using “compliance” mainly in the pejorative “pt is non-compliant” way. Now that I’m a #metastaticbreastcancer pt I know better and would use plain language (“pt not taking meds because....”) #patientchat |
| Christina Lizaso @btrfly12 RT @abrewi3010: A2 as a patient I need industry for my quality of life. Medication industry has tremendous power because of this. Blaming me does nothing but further us vs them battles. #patientchat |
| Christina Lizaso @btrfly12 RT @LReedsbooks: @patientchat T2 - These words can be strong trigger words for patients which can negatively impact patient care. And of course, none of these allow an understanding as to why there might be a lack of compliance or adherence. #patientchat |
| Dr. Kelly Shanahan @stage4kelly T3. Side effects, side effects, side effects. And cost. #patientchat |
| Carly Flumer (she/her) @carlyflumer T3: Two words: HEALTH LITERACY. Understanding how and when to take your medication is everything. Additionally, I feel that patients who are on their own (ie. no caregiver to assist) may also face challenges. #patientchat |
| Alan Brewington @abrewi3010 A3 patients are choosing between meds & rent. Meds vs groceries. Stigma caused by orgs like the #CDC or law enforcement in the case of #chronicpain #patientchat |
| Melissa VanHouten @melissarvh Many reasons: cost, negative side effects, risk of long-term issues, inconvenience, ineffectiveness. I have walked out of a doc's office before knowing I would not fill the prescription simply b/c I was done arguing with him. Had no intention of following "orders." #patientchat |
 | Ody @OdyO11 @patientchat I'm late to #patientchat. I'm a patient with a rarely diagnosed disease from Europe. |
 | Lung Cancer #1 cancer killer of women @VirginiaMByrne RT @stage4kelly: T1. As someone who practiced medicine for 25 years I’m guilty of using “compliance” mainly in the pejorative “pt is non-compliant” way. Now that I’m a #metastaticbreastcancer pt I know better and would use plain language (“pt not taking meds because....”) #patientchat |
| Carly Flumer (she/her) @carlyflumer @stage4kelly Yes, absolutely. And then, I feel, patients are too afraid to relay this to their healthcare team, and the doc never finds out. #patientchat |
 | Spencer Health Solutions @spencerhealth @btrfly12 and #persistence. Does the patient keep taking their meds? #patientchat |
 | Csilla @Csilla008 RT @melissarvh: I honestly do not like any of these terms because I do not think they convey that I am actually the leader in my own care. I particularly detest "compliance." #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T3 - Side effects, lack of clarity on dosage, a concern that this might not be the right medication for whatever reason. #patientchat |
| Christina Lizaso @btrfly12 T2: Thinking that as more and more patients attend medical conferences both virtually and in-person, there is I'm sure a slew of terms they all use and know what they mean by them but are not patient-centric or patient-respectful. #patientchat |
| Lung Cancer #1 cancer killer of women @VirginiaMByrne "Non-compliant" reminds me of Catholic school. 😂 |
| Christina Lizaso @btrfly12 RT @melissarvh: Many reasons: Many reasons: cost, negative side effects, risk of long-term issues, inconvenience, ineffectiveness. I have walked out of a doc's office before knowing I would not fill the prescription simply b/c I was done arguing with him. Had no intention of following "orders." #patientchat |
| Spencer Health Solutions @spencerhealth @patientchat Our lives are busy, busy, busy. #PatientChat |
 | Jamie Roger @JamieRoger8 I was patiently waiting at my computer for #patientchat and then decided I was thirsty and went downstairs to get a drink... and forgot what time it was. Glad I made it for the second half at least. Jamie from CT |
| Ody @OdyO11 @patientchat T1: Compliance and adherence seem based on a patriarchal model in which the doctor has all the knowledge and the patient needs to oblige. Participation is better - though I think it would be best to just state "patient doesn't take medication regularly because..." #patientchat |
| Christina Lizaso @btrfly12 T3: Life keeps moving and some weeks even the best laid plans get thrown out the window. Keeping up with daily meds is easier when you have a routine. But how often does life stay on routine? #patientchat |
| Ody @OdyO11 @patientchat T1: The reasons why patients don't take medication as prescribed are important. #patientchat |
| Christina Lizaso @btrfly12 RT @OdyO11: @patientchat T1: @patientchat T1: Compliance and adherence seem based on a patriarchal model in which the doctor has all the knowledge and the patient needs to oblige. Participation is better - though I think it would be best to just state "patient doesn't take medication regularly because..." #patientchat |
| Jamie Roger @JamieRoger8 Difficulty remembering, dealing with different directions for different meds, access to meds, cost. #patientchat |
| Ody @OdyO11 RT @LReedsbooks: @patientchat T2 - These words can be strong trigger words for patients which can negatively impact patient care. And of course, none of these allow an understanding as to why there might be a lack of compliance or adherence. #patientchat |
 | Janet Kennedy @GetSocialHealth If I were on a second round of antibiotic and felt better I might not complete the perscription. (I know, I know) #PatientChat https://t.co/sy8BhbuHnt |
| Jamie Roger @JamieRoger8 Or the patients may just not be able to tolerate the side effects. #patientchat |
| Patient Chat @patientchat Topic 4 (T4:)... coming up #patientchat https://t.co/pCG1FZRbx0 |
| Spencer Health Solutions @spencerhealth RT @JamieRoger8: Difficulty remembering, dealing with different directions for different meds, access to meds, cost. #patientchat |
 | R @rhrousu @patientchat T3: I think that this happens when the doctor doesn’t listen to me, then prescribes something that won’t work for me ($, time, side effects, counter-indicated, already tried) #patientchat |
| Patient Chat @patientchat T4: Have you ever not followed treatment or taken medication exactly as prescribed? #patientchat https://t.co/JpLso33FLm |
| Ross @Rossco006 @btrfly12 @fireflyrn84 @patientchat Its good to make a chat. I haven’t been able to get to a lot of the chats because the times just don’t work out for me. #patientchat |
| Ody @OdyO11 @patientchat T2: The terms adherence/compliance have a tendency to put blame on patients, which comes with a risk of dismissal. Also, they don't recognize that it's not a "one size fits all" approach, that there are outliers, that patients have reasons for what they do. #patientchat |
| Jamie Roger @JamieRoger8 My grandmother specifically may not use her meds as prescribed because she is unable to use them on her own. Administering eyedrops is difficult with hands ravaged by arthritis... having to do it 4 times a day is even more trying. #patientchat |
| Lisa Sutton @Lisaksutton87 T3: Varies from person to person but some reasons are remembering to take, taking too many meds feels like a burden, access to low cost medications, high deductables, not understanding the why or how the medication works, don't feel you need it #patientchat |
| Christina Lizaso @btrfly12 T4: I have a clear memory of driving away from the pharmacy without a pill for my child that turned out to be $90. #patientchat |
| Christina Lizaso @btrfly12 RT @JamieRoger8: My grandmother specifically may not use her meds as prescribed because she is unable to use them on her own. Administering eyedrops is difficult with hands ravaged by arthritis... having to do it 4 times a day is even more trying. #patientchat |
| R @rhrousu @patientchat T3: For example, I have gastroparesis, so if I am told to take something on an empty stomach and my dr doesn’t suggest an alternative strategy when I tell them I never have one 🤷♀️. #patientchat |
| Christina Lizaso @btrfly12 RT @OdyO11: @patientchat T2: @patientchat T2: The terms adherence/compliance have a tendency to put blame on patients, which comes with a risk of dismissal. Also, they don't recognize that it's not a "one size fits all" approach, that there are outliers, that patients have reasons for what they do. #patientchat |
| Melissa VanHouten @melissarvh Many times. I especially love medications that require me to "take with food." :) I have #Gastroparesis. If I could do that, I might not need the medication. #patientchat |
| Christina Lizaso @btrfly12 RT @rhrousu: @patientchat T3: @patientchat T3: For example, I have gastroparesis, so if I am told to take something on an empty stomach and my dr doesn’t suggest an alternative strategy when I tell them I never have one 🤷♀️. #patientchat |
| Jamie Roger @JamieRoger8 treatment yes. I am awful at the "take it easy" portion. If my body feels up to it, I will usually do it... even if that means lifting over the cutoff amount I usually listen with meds. #patientchat |
| Sakinah Kaiser (She/Her) @themuslimhippie RT @JamieRoger8: My grandmother specifically may not use her meds as prescribed because she is unable to use them on her own. Administering eyedrops is difficult with hands ravaged by arthritis... having to do it 4 times a day is even more trying. #patientchat |
| Spencer Health Solutions @spencerhealth @OdyO11 @patientchat There are words that are needed for scientific purposes - they must be used to make sure we're all on the same page. That said, not all scientific words make sense in everyday parlance. #patientchat #healthliteracy |
| Alan Brewington @abrewi3010 A4 with the stupid #CDC sticking it’s unwanted noise into #chronicpain management I know many patients are saving their meds for “absolute” need. The fear of CDC #opioidhysteria is causing huge issues #patientchat |
| Ody @OdyO11 @patientchat T3: More urgent problems (financial or health-wise), side effects and/or no observable positive effect, no good communication with prescribing doctors about the patient's priorities and lived experiences. One-size-fits-all approach that doesn't fit. #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T4 - I'm generally pretty good about following as prescribed unless there are side effects (big welts from lidocaine patches) or I feel a drug is not effective or is mismatched to what it is intended to fix. #patientchat |
| Ross @Rossco006 @fireflyrn84 So good to hear that you got home!!! 🤗#patientchat |
 | Carolyn Thomas ☮️ @HeartSisters @btrfly12 Thanks for sharing this, Christina! ❤️#PatientChat |
| Carolyn Thomas ☮️ @HeartSisters RT @btrfly12: T1: T1: Found this nice piece by @HeartSisters discussing the issues and a suggestion of using the word "concordance" https://t.co/5oWVmkxLit #patientchat |
| Alan Brewington @abrewi3010 RT @btrfly12: T4: T4: I have a clear memory of driving away from the pharmacy without a pill for my child that turned out to be $90. #patientchat |
| Ody @OdyO11 @patientchat T3: Also: Obvious misdiagnoses (e.g. physical symptoms misdiagnosed as psychogenic) or no attention to the underlying disorder or comorbidities. #patientchat |
| Christina Lizaso @btrfly12 T4: I know of patients who decided to stop treatment but were never offered lower doses or a discussion about how to make the medication tolerable. #patientchat |
| R @rhrousu @patientchat T3: I also have a full time career and two kids, so even taking my daily medicine where I have to prep something and slowly drink it, then deal with being nauseated means I have to choose between “compliance” and sleeping. Sometimes sleeping wins. #patientchat |
| Patient Chat @patientchat Final topic (T5:) coming right up... #patientchat |
| Alan Brewington @abrewi3010 A4 when I was uninsured I walked away from meds. When a patient is only making $8/hr a $500 30 day m medication is not going to happen #patientchat |
| Melissa VanHouten @melissarvh RT @OdyO11: @patientchat T3: @patientchat T3: More urgent problems (financial or health-wise), side effects and/or no observable positive effect, no good communication with prescribing doctors about the patient's priorities and lived experiences. One-size-fits-all approach that doesn't fit. #patientchat |
| Ody @OdyO11 @spencerhealth @patientchat Thing is: Is there research into the reasons why patients don't adhere to treatment protocols? I've seen research that used "blaming patients" as a blackbox for not looking into adverse outcomes, which can be very problematic. #patientchat |
| Christina Lizaso @btrfly12 T4: I've been in practices that are very "prescribe and go". Until we make space for real participatory medicine during appointments, really hard to leave with a realistic plan for treatment or meds. There is much knowledge on both sides that has to come together #patientchat |
 | Kelly Anderson @kelly_archives RT @GetSocialHealth: If I were on a second round of antibiotic and felt better I might not complete the perscription. (I know, I know) #PatientChat https://t.co/sy8BhbuHnt |
| Patient Chat @patientchat T5: What is the role of care partners, HCPs, and/or technology in medication management? #patientchat https://t.co/iwyo3QycLk |
| Christina Lizaso @btrfly12 RT @OdyO11: @spencerhealth @patientchat Thing is: @spencerhealth @patientchat Thing is: Is there research into the reasons why patients don't adhere to treatment protocols? I've seen research that used "blaming patients" as a blackbox for not looking into adverse outcomes, which can be very problematic. #patientchat |
| Christina Lizaso @btrfly12 RT @patientchat: T5: T5: What is the role of care partners, HCPs, and/or technology in medication management? #patientchat https://t.co/iwyo3QycLk |
| Ody @OdyO11 @patientchat T4: Yes, when I experienced adverse effects and there was an obvious correlation between treatment and adverse effects. If this happens, I communicate it to HCPs. #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T5 - HCP's need to make sure they've listened appropriately, discussed the options with patients, and have gained agreement as to the path forward. #patientchat |
| Christina Lizaso @btrfly12 T5: As much as no one is prepared for it, finances has to be part of the discussion during the treatment planning. Ignoring it isn't helping anyone. #patientchat |
| R @rhrousu @patientchat T4: If the treatment means I have to take time off of work (multiple appointments, side effects that keep me from driving or make me drowsy, etc.), I usually try to weasel my way out of it so I can save my sick leave for when I or my kids have something contagious #patientchat |
| Ody @OdyO11 @patientchat T4: Unfortunately, it happens repeatedly that reports of negative effects are dismissed as "this can't be". It's problematic when it's assumed that there can't be any outliers, but when there is no research based on a population with my condition. #patientchat |
| Spencer Health Solutions @spencerhealth @OdyO11 @patientchat Yes, there are studies on why patients are not adherent. I'll pull some and post later today. In the meantime, there is some background info in this whitepaper we wrote. (Don't mean to be promotional). #PatientChat https://t.co/dStKwSwFmA |
| Alan Brewington @abrewi3010 A5 we need to bust the silos around patients, doctors, and pharmacy. Technology is a great tool but absolutely useless if these 3 parties don’t practice #everyoneincluded. #patientchat |
| Lisa Sutton @Lisaksutton87 T5: HCP's need to take time to explain why you need the med, how the med works and potential side effects and how to take. Technology is booming and there are medication reminder Apps and electronic tracking of devices (pill bottles or dispensers) as well! #patientchat |
 | Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @abrewi3010 And research... #patientchat #GUinformatics |
 | Mary MACK @MaryOCMack T3 Late to the chat, but high prices are a main cause in my opinion. #patientchat |
| Ody @OdyO11 @patientchat T5: Helping the patient to make informed decisions, to recognize adverse effects and to know what to do in the case of adverse effects. Generally: Supporting the patient. #patientchat |
| Christina Lizaso @btrfly12 RT @OdyO11: @patientchat T4: @patientchat T4: Unfortunately, it happens repeatedly that reports of negative effects are dismissed as "this can't be". It's problematic when it's assumed that there can't be any outliers, but when there is no research based on a population with my condition. #patientchat |
| Jamie Roger @JamieRoger8 RT @abrewi3010: A5 we need to bust the silos around patients, doctors, and pharmacy. Technology is a great tool but absolutely useless if these 3 parties don’t practice #everyoneincluded. #patientchat |
| Christina Lizaso @btrfly12 RT @rhrousu: @patientchat T4: @patientchat T4: If the treatment means I have to take time off of work (multiple appointments, side effects that keep me from driving or make me drowsy, etc.), I usually try to weasel my way out of it so I can save my sick leave for when I or my kids have something contagious #patientchat |
| Melissa VanHouten @melissarvh RT @OdyO11: @patientchat T5: @patientchat T5: Helping the patient to make informed decisions, to recognize adverse effects and to know what to do in the case of adverse effects. Generally: Supporting the patient. #patientchat |
 | Mat @mthompson6226 RT @spencerhealth: @OdyO11 @patientchat Yes, there are studies on why patients are not adherent. I'll pull some and post later today. In the meantime, there is some background info in this whitepaper we wrote. (Don't mean to be promotional). #PatientChat https://t.co/dStKwSwFmA |
| Mat @mthompson6226 RT @spencerhealth: @patientchat Our lives are busy, busy, busy. #PatientChat |
| Christina Lizaso @btrfly12 T5: I know that I have never taken the time to talk to the pharmacist, even though most now ask you if you'd like to. I mean, there is no private place to talk, but I could still be more willing to use the knowledge they have #patientchat |
| Patient Chat @patientchat Time to start sharing closing thoughts (CT) on what you learned, were reminded of or can implement from today's discussion. You can start your tweet w/ CT: #patientchat |
| Mat @mthompson6226 RT @spencerhealth: @OdyO11 @patientchat There are words that are needed for scientific purposes - they must be used to make sure we're all on the same page. That said, not all scientific words make sense in everyday parlance. #patientchat #healthliteracy |
| Spencer Health Solutions @spencerhealth @patientchat T5 (Speaking as a vendor with a solution) we feel strongly that any technology must start with the #patient perspective. If your tech is not designed with the patient's daily life in mind you are missing the boat. #patientchat |
| Ody @OdyO11 RT @btrfly12: T1: T1: The issue of "taking medications as prescribed" has a history of paternalistic terms AND attitude to go with it. Not sure we have a good patient-centered term. Adherence seems to be what industry folks call it when they discuss and study it. #patientchat |
| Alan Brewington @abrewi3010 Yes X 100000000! Social & economic factors MUST become a part of any medication discussion. #patientchat |
| Carly Flumer (she/her) @carlyflumer T5: To make sure that patients are understanding how to manage their medication properly and communicate clearly. #patientchat |
| Mary MACK @MaryOCMack T5: role is to talk about the benefit of taking it, possible adverse side effects, contraindications to any other meds and the cost of the medication. #patientchat |
| Ody @OdyO11 RT @btrfly12: T4: T4: I've been in practices that are very "prescribe and go". Until we make space for real participatory medicine during appointments, really hard to leave with a realistic plan for treatment or meds. There is much knowledge on both sides that has to come together #patientchat |
| Carly Flumer (she/her) @carlyflumer @Lisaksutton87 Yes to all of this! #patientchat |
| Alan Brewington @abrewi3010 @coffeemommy Good point!! #patientchat |
| Christina Lizaso @btrfly12 CT: Always a thrill to be able to make a #patientchat - especially now that I almost never can. Love the space for varying perspectives to come together. Thanks @power4patients and all who join in and make it great. |
| Laurie Reed @LReedptadvocate @patientchat CT - As always, I appreciate everyone's honesty. Such great insights and perspectives. Thank you! #patientchat |
| Ody @OdyO11 @patientchat CT: Words matter. I wish doctors would see patients as able to make decisions about their own lives that should be respected and supported. I wonder what role language plays in the attitude doctors have towards patients. #patientchat |
| Christina Lizaso @btrfly12 CT: Getting those outside "patient land" on board with participatory medicine and patient-centered terms and practices is always a struggle and can wear us down - but persist we will :) #patientchat |
| R @rhrousu @patientchat T4: I think that HCPs sometimes forget that pts have lives, are often caregivers themselves, and aren’t just sitting around waiting for more things to add to their to-do lists. Minor ex- I hurt my knee 5 days ago, have only managed to ice it 3x & even that was hard. #patientchat |
| Melissa VanHouten @melissarvh Respectful language and communication among all parties involved in care are key, and communication must be honest, open, address problems and concerns, and take into account patient goals/needs/desires. #patientchat |
| Mary MACK @MaryOCMack Closing thought: The cost of medication is absurdly and life-threateningly high in the USA. Has to change. #patientchat |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. This handle will tweet out the transcript about 15 minutes past the hour. |
| Ody @OdyO11 RT @melissarvh: Respectful language and communication among all parties involved in care are key, and communication must be honest, open, address problems and concerns, and take into account patient goals/needs/desires. #patientchat |
| Jamie Roger @JamieRoger8 Hope everyone had a great week. Hopefully next time I wanted have a hiccup with remembering when #patientchat starts. Have a wonderful and restful weekend! |
| Patient Chat @patientchat The next Empowered #patientchat will be Friday, November 1st at 1pm ET | 10am PT Hope you can join! https://t.co/WnNtJyPFia |
| Alan Brewington @abrewi3010 CT improved communication is needed immediately. New language needs to be developed immediately. If this happens then “how might we...?” because the standard. #patientchat |
| Melissa VanHouten @melissarvh RT @patientchat: The next Empowered #patientchat will be Friday, November 1st at 1pm ET | 10am PT Hope you can join! https://t.co/WnNtJyPFia |
| Patient Chat @patientchat Keep the conversation going between chats - tweet things of interest to empowered patients with hashtag #patientchat |
| Patient Chat @patientchat Reminder for today’s chat - Notifications/DMs will be checked and followed up on by @power4patients in the coming days. #patientchat |
| Christina Lizaso @btrfly12 RT @rhrousu: @patientchat T4: @patientchat T4: I think that HCPs sometimes forget that pts have lives, are often caregivers themselves, and aren’t just sitting around waiting for more things to add to their to-do lists. Minor ex- I hurt my knee 5 days ago, have only managed to ice it 3x & even that was hard. #patientchat |
| Christina Lizaso @btrfly12 RT @OdyO11: @patientchat CT: @patientchat CT: Words matter. I wish doctors would see patients as able to make decisions about their own lives that should be respected and supported. I wonder what role language plays in the attitude doctors have towards patients. #patientchat |
| Ross @Rossco006 Sorry everyone! I just haven’t been alert enough on today’s chat to respond. #patientchat |
| Ody @OdyO11 RT @btrfly12: T2: T2: Thinking that as more and more patients attend medical conferences both virtually and in-person, there is I'm sure a slew of terms they all use and know what they mean by them but are not patient-centric or patient-respectful. #patientchat |
| Ody @OdyO11 RT @stage4kelly: T1. As someone who practiced medicine for 25 years I’m guilty of using “compliance” mainly in the pejorative “pt is non-compliant” way. Now that I’m a #metastaticbreastcancer pt I know better and would use plain language (“pt not taking meds because....”) #patientchat |
| R @rhrousu RT @btrfly12: T5: T5: As much as no one is prepared for it, finances has to be part of the discussion during the treatment planning. Ignoring it isn't helping anyone. #patientchat |
| Patient Chat @patientchat Thanks to all for today's #patientchat discussion and for all you do as a advocate for yourself and others. Reach out to @patientchat @power4patients for any follow ups. |
| Ody @OdyO11 RT @melissarvh: Language, terms, always convey something deeper-a sentiment, and attitude, or mindset. Many of these terms convey that industry still does not consider patients as partners or understand that patients do indeed direct their own care. Consider "patient activation." #patientchat |
| Lisa Sutton @Lisaksutton87 CT: HCP's need to address the barriers to medication compliance individually with each patient as there are varying reasons that patients can't or choose not to comply #patientchat |
| Ody @OdyO11 RT @abrewi3010: A2 industry terms assign blame without taking any responsibility. #patientchat |
| Ross @Rossco006 A3: I think there’s numerous reasons that patients don’t take meds as prescribed. However desperation and the inability to control pain levels in chronic pain patients is a big reason. #patientchat |
| Ody @OdyO11 RT @melissarvh: I honestly do not like any of these terms because I do not think they convey that I am actually the leader in my own care. I particularly detest "compliance." #patientchat |
| Christina Lizaso @btrfly12 RT @Rossco006: A3: A3: I think there’s numerous reasons that patients don’t take meds as prescribed. However desperation and the inability to control pain levels in chronic pain patients is a big reason. #patientchat |
| Christina Lizaso @btrfly12 RT @Lisaksutton87: CT: CT: HCP's need to address the barriers to medication compliance individually with each patient as there are varying reasons that patients can't or choose not to comply #patientchat |
| Ross @Rossco006 @JamieRoger8 Great point Jamie! #patientchat |
 | Social Justice Warrior @drarlenetaylor This so many times over. We can’t judge those decisions when we haven’t walked in their shoes. Affordability, side effects, understanding, these all impact on that dirty word (and let’s not forget the basic principle of autonomy). |
| Christina Lizaso @btrfly12 #patientchat |
| J.B. et al., 🔭𓆏 🌊 @negronjb RT @patientchat: T3: T3: Why do you think some patients do not take their medications as prescribed? What are some of the reasons for yourself or others? #patientchat https://t.co/v1opAKgPi2 |
#patientchat content from Twitter.