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Slide presentation from Day Two of the PCORnet Partners meeting. The January 21-2, 2014 meeting took place at the Brookings Institute. This event launched the development of the nation’s most ambitious and promising clinical research network aimed at delivering high quality care through patient-centered outcomes research.
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Patient Engagement within PCORnet
Engelberg Center for Health Care Reform The Brookings Institution • Washington, DC
January 21-22, 2014
Bray Patrick-Lake Patient Representative, Executive Leadership Committee, PCORnet Coordinating Center
Patients need relevant, high quality information for informed decision making
Complex navigation of risk/benefit tradeoffs Dependent on where patients are in trajectory of the disease Delicate balance of co-morbidities Long term consequences vs. short term benefit Quality vs. quantity of life Respectful of cultural preferences
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Based on my personal characteristics, what can I expect my outcome to be? WE DON’T KNOW
Therapies reach market after study in cleanest population possible Smallest number of patients, shortest amount of time possible Results often an average; some receive benefit, others harm Subgroup analysis on single variables Things patients care about most are absent - QOL and PROs
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The current system is broken; patients are over it.
Incredible waste of resources on repetitive activities Unnecessary delays due to bureaucracy Recruitment and retention failures rampant Data that could help patients remains inaccessible Research results don’t get disseminated to patients or translated into decision support tools
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Patients dream of …
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A high quality clinical research system that is patient-centered and efficient, enabling reliable and timely access to
evidence-based prevention & treatment options that are responsive
to patients’ individual needs
Maybe we should ask patients how to achieve this …
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Patient
Designer of Research
Creator of Disease Specific Infrastructure
Driver of National Research Infrastructure
Participant in Research
Activated Patient
Reviewer of Research
Evolution of patient engagement in research: PCORnet’s history in the making
PCORnet and its partners make the dream a reality
Dream team of research and patient experts working on PCORnet Historic amount of patient engagement in research Unprecedented opportunities for collaboration, knowledge sharing, and community building Together we will make a difference in the lives of millions of patients
(and change our nation’s clinical research system forever!)
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Evaluation
Engelberg Center for Health Care Reform The Brookings Institution • Washington, DC
January 21-22, 2014
PCORnet Evaluation: Multiple Parts, Singular Goal
Sarah Greene, MPH, PCORI Sarah Daugherty, PhD, MPH, PCORI Erin Holve, PhD, AcademyHealth Eric Schneider, MD, MSc, RAND
Why Are We Evaluating PCORnet?
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PCORnet represents an unparalleled opportunity to undertake a real-time examination of key building blocks for a successful national research network
This examination allows us to contribute to PCORI’s goal of building a durable infrastructure that meets the nation’s need for patient-centered CER
As PCORnet partners, you are ideally positioned to help us understand how to optimize the network…while strengthening your own capabilities
Collaboration
Trust Engagement
Aligning Our PCORnet Evaluation with PCORI’s Strategic Plan
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The 3 Components of PCORnet Evaluation Activities
External Evaluation
Program Monitoring & Self-Evaluation
Evaluating Engagement
Evaluation with Technical Assistance
Evaluation, No Technical Assistance
Guiding Principles for Each Component
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Evaluation approaches will be: Disciplined: we will only collect data that we--or your
network--can act on
Judicious: we will be mindful of how often we ask you
for information
Coordinated: we will work together to ensure efficient
processes
Usable Information
Respondent Burden
Anticipated Timeline for Assessments
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Month 18 Month 0
Ongoing Observation by RAND RAND Intvs
Engt Survey
Engt Survey
Engt Survey
PCORI
AH
PCORI
AH
PCORI
AH
PCORI
AH
PCORI
AH
Engaging Patients in Infrastructure
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Engage
Evaluate Enhance
Internal Monitoring to Support Technical Assistance and PCORnet Objectives
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Assess the productivity and effectiveness of
PCORnet Identify
opportunities for new
collaborations, research studies,
and partners
Receive technical assistance from the CC, including policy
development or guidance from
PCORI Challenges & Requests for
Support Products & Outcomes
Participation & the Value of Participation
Sustainability
Milestone Reporting
External Evaluation
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CC
PCORnet Baseline PCORnet Future
III. Capability Evaluation
(@18 months)
I. Process Evaluation
II. Barrier/facilitator Evaluation
CC
Discussion Questions
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Engaging Patients What evidence do you wish you had with regard to patient engagement?
How can this evidence support your decision-points about when, why, and whom to engage?
Internal Monitoring Are there specific areas for lessons learned (or challenges) that the internal monitoring process should explore or track?
Are there favorable approaches for asking about needed technical assistance?
External Evaluation What do partners view as the most important facilitators of network participation?
What do partners view as the main challenges to network participation?
Next Steps for Developing Core Research
Capabilities
Engelberg Center for Health Care Reform The Brookings Institution • Washington, DC
January 21-22, 2014
Table Discussion Questions
• What is the ONE thing you haven’t heard yet during our sessions that you think is important for the group to be considering?
• What do you think are the TWO most important next steps your network and organizations must take moving forward?
