T1. Kelly, metastatic breast cancer patient & advocate joining late. We should be involved in every stage of trial design. We know what's important to us in terms of outcomes and side effects. #patientchat
November 19, 2024 at 3:22 AM
T1. Kelly, metastatic breast cancer patient & advocate joining late. We should be involved in every stage of trial design. We know what's important to us in terms of outcomes and side effects. #patientchat
T5. I think the question should be how can patients find out about opportunities to contribute more. Is there a registry for patients who want to be involved? I know the metastasis research society has one, but what about others? #patientchat
November 19, 2024 at 3:22 AM
T5. I think the question should be how can patients find out about opportunities to contribute more. Is there a registry for patients who want to be involved? I know the metastasis research society has one, but what about others? #patientchat
Glad I found this chat - great discussion!! #patientchat
November 19, 2024 at 3:22 AM
Glad I found this chat - great discussion!! #patientchat
Hi everyone! Kelly, former ob/gyn current metastatic breast cancer patient & advocate, joining from beautiful Lake Tahoe #patientchat
November 18, 2024 at 11:52 PM
Hi everyone! Kelly, former ob/gyn current metastatic breast cancer patient & advocate, joining from beautiful Lake Tahoe #patientchat
T1. Patients are the ultimate stakeholders. we will work harder than anyone to drive research, report outcomes, figure out solutions #patientchat
November 18, 2024 at 11:52 PM
T1. Patients are the ultimate stakeholders. we will work harder than anyone to drive research, report outcomes, figure out solutions #patientchat
And there's a difference between patients attending conferences and being included in conferences. I go to a lot of conferences were patients attend but very few were patients are truly partners #patientchat
November 18, 2024 at 11:52 PM
And there's a difference between patients attending conferences and being included in conferences. I go to a lot of conferences were patients attend but very few were patients are truly partners #patientchat
T3. I'm a patient AND a doctor, so I get the hurdles of regulations and how time consuming science can be, but as a patient I understand the urgency. I know we can think outside the box to make change happen. #PatientChat
November 18, 2024 at 11:52 PM
T3. I'm a patient AND a doctor, so I get the hurdles of regulations and how time consuming science can be, but as a patient I understand the urgency. I know we can think outside the box to make change happen. #PatientChat
T4. Have patients as equal partners on the planning committee - involve us from day one for a richer, more meaningful conference for everyone #PatientChat
November 18, 2024 at 11:52 PM
T4. Have patients as equal partners on the planning committee - involve us from day one for a richer, more meaningful conference for everyone #PatientChat
Got so engrossed in this #PatientChat that my French press coffee has been steeping forever! Oh well, I'll froth some almond milk and turn it into a latte! ☕️
November 18, 2024 at 11:52 PM
Got so engrossed in this #PatientChat that my French press coffee has been steeping forever! Oh well, I'll froth some almond milk and turn it into a latte! ☕️
T1: set up google alerts for your disease so you can keep up with what’s new #patientchat
November 18, 2024 at 7:53 PM
T1: set up google alerts for your disease so you can keep up with what’s new #patientchat
T2: for my personal health I’m committing to eating better and exercising more - and am scheduling workouts/classes in my calendar to prioritize them. #patientchat
November 18, 2024 at 7:53 PM
T2: for my personal health I’m committing to eating better and exercising more - and am scheduling workouts/classes in my calendar to prioritize them. #patientchat
T3: learn everything you can about your disease. Your doc may be an expert in medicine but you’re an expert in you.if it’s advanced cancer, and you see a general onc, you may know more about your particular type of cancer than she does. #patientchat
November 18, 2024 at 7:53 PM
T3: learn everything you can about your disease. Your doc may be an expert in medicine but you’re an expert in you.if it’s advanced cancer, and you see a general onc, you may know more about your particular type of cancer than she does. #patientchat
T3: get a second opinion, especially if rare or advanced disease #patientchat
November 18, 2024 at 7:53 PM
T3: get a second opinion, especially if rare or advanced disease #patientchat
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
November 18, 2024 at 1:50 PM
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
T3. Side effects, side effects, side effects. And cost. #patientchat
November 18, 2024 at 1:50 PM
T3. Side effects, side effects, side effects. And cost. #patientchat
Storytelling has a unique way of identifying with the audience. Its one thing to offer words, or present industry perspectives, but to share a personal journey is to connect with PEOPLE. #Patientchat #WTFix
November 24, 2024 at 1:45 PM
Storytelling has a unique way of identifying with the audience. Its one thing to offer words, or present industry perspectives, but to share a personal journey is to connect with PEOPLE. #Patientchat #WTFix
#patientchat happy to be joining from @mayoclinic
November 25, 2024 at 3:31 AM
#patientchat happy to be joining from @mayoclinic
#patientchat T1 yes, go online. @mayoclinic.com
November 25, 2024 at 3:23 AM
#patientchat T1 yes, go online. @mayoclinic.com
#patientchat T1 online, one must know the background and source of info. Credible?
November 25, 2024 at 3:23 AM
#patientchat T1 online, one must know the background and source of info. Credible?
#patientchat T2 Imperfect and frustrating now. Great promise!
November 25, 2024 at 3:23 AM
#patientchat T2 Imperfect and frustrating now. Great promise!
November 25, 2024 at 3:23 AM
#patientchat T3 list of questions and a second set of #ears!
November 25, 2024 at 3:23 AM
#patientchat T3 list of questions and a second set of #ears!
@RWJF_HumanCap #patientchat I cannot think of a time: Can always self print e-content
November 25, 2024 at 3:15 AM
@RWJF_HumanCap #patientchat I cannot think of a time: Can always self print e-content
November 25, 2024 at 3:15 AM