视觉研究和科学家讨论.pdf

1、SESSION 2:Vision Research and the Citizen ScientistMabel Crescioni,DrPH,JDModeratorSenior Engagement OfficerPatient-Centered Outcomes Research Institute Prevent BlindnessVision Research and the Citizen ScientistMabel Crescioni,DrPH,JD,LLMSenior Engagement OfficerPCORI.orgPatient-Centeredness vs.Pati

2、ent EngagementPatient-Centeredness Addresses outcomes(both benefits and harms)that are important to patients The interventions proposed for comparison are currently available to patients Study design is low burden to participantsPatient and Stakeholder Engagement Patients and stakeholders are partne

3、rs in research,not only“subjects”or participants Leverages the expertise of patients,clinicians and other stakeholders for the purpose of improving study design and conduct Includes a range of engagement approaches:input,consultation,collaboration,shared leadership Can occur by building upon existin

4、g relationships,or developing new ones“Research Done Differently”4Forsythe LP,Carman KL,et al.Patient Engagement In Research:Early Findings From The Patient-Centered Outcomes Research Institute.Health Aff(Millwood).2019 Mar;38(3):359-367;PCORI Board of Governors Meeting,December 9,2019,https:/www.pc

5、ori.org/sites/default/files/PCORI-Board-Meeting-Presentation-Slides-120919.pdf,p.32-69Maurer ME,et.Al 2022.Understanding the Influence and Impact of Stakeholder Engagement in Patient-centered Outcomes Research:a Qualitative Study.J Gen Intern Med.2022 Apr;37(Suppl 1):6-13.PCORI research has shown th

6、at engagement makes a meaningful differences in studies:5PCORIs Foundational Expectations for Partnerships in ResearchSESSION 2 PANEL:Vision Research and the Citizen ScientistMabel Crescioni,DrPH,JDSenior Engagement Officer,Patient-Centered