#cshpatwork search results
A1: It means that we all can be a piece of the research puzzle! #CSHPatWork #RaRETweetChat #LetsEngage #RareDiseases
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
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
A1: It matters because resources are scarce and they should be directed toward answering the questions that really matter to those impacted. #CSHPatWork #RaRETweetChat
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
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
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
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
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
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
Participating in a 2 day event to discuss RaRE Disease in order to improve research! #CSHPatWork
A3. Engagement gone bad looks like ruined trust. #CSHPatWork #RaRETweetChat
A3. Engagement gone bad looks like “normal” research. To borrow from @PCORI, the goal is research done differently! #LetsEngage #CSHPatWork #RaRETweetChat
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
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
Rare diseases aren’t rare when you realize how many are affected. Our work with RaRE will explore shared challenges in rare diseases to help improve outcomes. #CSHPatWork
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
This is so important, and transparency should extend to all parts of a project -outcomes, design, budgets, etc. #RareTweetChat #CSHPatWork.
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
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 (uhc.com)
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
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.
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 (uhc.com)
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
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
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
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
A3. Engagement gone bad looks like “normal” research. To borrow from @PCORI, the goal is research done differently! #LetsEngage #CSHPatWork #RaRETweetChat
A3. Engagement gone bad looks like ruined trust. #CSHPatWork #RaRETweetChat
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
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
A1: It matters because resources are scarce and they should be directed toward answering the questions that really matter to those impacted. #CSHPatWork #RaRETweetChat
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
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
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
Participating in a 2 day event to discuss RaRE Disease in order to improve research! #CSHPatWork
A1: It means that we all can be a piece of the research puzzle! #CSHPatWork #RaRETweetChat #LetsEngage #RareDiseases
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
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
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