Top Tweets for #CSHPAtWork
As #PCORI2022 is winding down, I am left wondering if @PCORI’s methodology standards are sufficiently broad to handle the increasing complexity of addressing root causes of health inequities in #PCOR. What about evidences bases for CER? Thoughts??? #CSHPAtWork
@HighDesertGems @JenBrownARCC @CSHPatWork @PCORI @Region4Genetics @MPHIhealth @Hassanah2017 @Poorcountryboy2 @mike_mitt wow, thanks @HighDesertGems! This is hard work that truely never ends, but it is insurmountable without partners like you, the rest of the team, and all my colleagues at @MPHIhealth. #CSHPAtWork
I’m excited to represent @CSHPatWork today at the @PCORI #RareDisease Advisory Panel meeting. It’s an honor to serve as chair of this panel that provides feedback to PCORI about research that meets the needs of the rare disease community. #CSHPAtWork
I remember Trent Haywood giving a keynote several years ago at the PCORI annual meeting and thinking why is there a payer here. I have learned a lot since then - such an important voice in our work. #RareTweetChat #CSHPatWork
A7: By participating in comparative effectiveness research, payers can provide information for people to make personalized healthcare decisions.
Trent Haywood of Blue Cross Blue Shield Association explains:
#RaRETweetChat
This is so important, and transparency should extend to all parts of a project -outcomes, design, budgets, etc. #RareTweetChat #CSHPatWork.
@Region4Genetics A7. Many Payer orgs have programs to improve health. for example @UnitedHealthCare supports individuals with #RareDiseases like this. #CSHPatWork #RaRETweetChat Newsroom - Special Needs Initiative helps remove health care barriers for Illinois twins (https://t.co/HhWYJJzLkP)
@Region4Genetics A7. Payers are villainized, but for engagement this is a mistake. Who knows better the level of evidence required for a payer to cover a treatment than payers? With this perspective, outcome measures critical to payers can be built in from the start. #CSHPatWork #RaRETweetChat
@Region4Genetics A6. A definitive answer will not be found in this #RaRETweetChat! Stakeholders should be asked if, when, and what they want to engage in. And they should be asked everytime – yes or no today does not mean yes or no tomorrow. #CSHPatWork #RaRETweetChat
@Region4Genetics Q5. #Engagement must be planned for. It requires time, money, and other resources that catch many research teams by surprise. Don’t be in a hurry, build strong relationships, then the conversation can move to research. #CSHPatWork #RaRETweetChat
@Region4Genetics A4. Patients are experts in their experience. They know what they want and what they need. Not all patients speak latin, scientistese, or clinicianese, but if you take time to hear them, they deliver a clear and important message. #PatientVoice #CSHPatWork #RaRETweetChat
@Region4Genetics A3. Engagement gone bad looks like “normal” research. To borrow from @PCORI, the goal is research done differently! #LetsEngage #CSHPatWork #RaRETweetChat
@Region4Genetics A3. Engagement gone bad looks like #Tokenism. It may not be possible to engage entire communities in every aspect of every study, but the voice of whole communities can be represented through authentic engagement efforts. #CSHPatWork #RaRETweetChat
@Region4Genetics A2. Define parameters for large institutions to provide infrastructure and oversight for smaller organization who have the pulse of the community and should lead the work but cant because they lack infrastructure. #CSHPatWork #RaRETweetChat
@Region4Genetics A2:Create funding opportunities that emphasize mentorship around authentic engagement. It would be great to see some version of the @PCORI Pipeline to Proposal Program return #CSHPatWork #RaRETweetChat
@Region4Genetics A1: It matters because resources are scarce and they should be directed toward answering the questions that really matter to those impacted. #CSHPatWork #RaRETweetChat
@Region4Genetics A1: This can be achieved many ways from asking for stakeholder input, to having stakeholder advisors, to having stakeholders as collaborators or leaders/decision makers in the work. #CSHPatWork #RaRETweetChat
@Region4Genetics A1: It means that research teams should understand the needs of those that are impacted by research and this understanding should be reflected in decision making, research agendas, etc. #CSHPatWork #RaRETweetChat
@Region4Genetics A1: It means that we all can be a piece of the research puzzle! #CSHPatWork #RaRETweetChat #LetsEngage #RareDiseases
How can we help unify the goals a family and their providers have for their loved one with a rare disorder? What patient-centered outcomes are important to all?#CSHPatWork
Most Popular Users
Elon Musk 
@elonmusk
240.3M followers
Barack Obama
@barackobama
119.3M followers
Donald J. Trump
@realdonaldtrump
111.6M followers
Cristiano Ronaldo
@cristiano
109.9M followers
Narendra Modi
@narendramodi
106.9M followers
Rihanna
@rihanna
97.5M followers
NASA
@nasa
92.1M followers
Justin Bieber
@justinbieber
90.7M followers
KATY PERRY
@katyperry
87.3M followers
Taylor Swift
@taylorswift13
81.1M followers
Lady Gaga
@ladygaga
72.7M followers
Kim Kardashian
@kimkardashian
69.6M followers
Virat Kohli
@imvkohli
69.3M followers
YouTube
@youtube
68.6M followers
Bill Gates
@billgates
63.7M followers
The Ellen Show
@theellenshow
62.5M followers
Neymar Jr
@neymarjr
62M followers
CNN
@cnn
61.9M followers
X
@x
60.9M followers
Selena Gomez
@selenagomez
60.4M followers