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.

1. Patient Engagement within PCORnet
Engelberg Center for Health Care Reform
The Brookings Institution • Washington, DC
January 21-22, 2014

2. Bray Patrick-Lake
Patient Representative,
Executive Leadership Committee,
PCORnet Coordinating Center

3. 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
3

4. 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
4

5. 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
5

6. Patients dream of …
6
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 …

7. 7
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

8. 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!)
8

9. Thank You!
bray.patrick-lake@duke.edu

10. Evaluation
Engelberg Center for Health Care Reform
The Brookings Institution • Washington, DC
January 21-22, 2014

11. PCORnet Evaluation:
Multiple Parts, Singular Goal
Sarah Greene, MPH, PCORI
Sarah Daugherty, PhD, MPH, PCORI
Erin Holve, PhD, AcademyHealth
Eric Schneider, MD, MSc, RAND

12. Why Are We Evaluating PCORnet?
12
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

13. Aligning Our PCORnet Evaluation with
PCORI’s Strategic Plan
13

14. The 3 Components of PCORnet
Evaluation Activities
External
Evaluation
Program Monitoring &
Self-Evaluation
Evaluating
Engagement
Evaluation with
Technical Assistance
Evaluation,
No Technical Assistance

15. Guiding Principles for Each Component
15
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

16. Anticipated Timeline for Assessments
16
Month 18Month 0
Ongoing Observation by RAND
RAND
Intvs
Engt
Survey
Engt
Survey
Engt
Survey
PCORI
AH
PCORI
AH
PCORI
AH
PCORI
AH
PCORI
AH

17. Engaging Patients in Infrastructure
17
Engage
EvaluateEnhance

18. Internal Monitoring to Support Technical
Assistance and PCORnet Objectives
18
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

19. External Evaluation
19
CC
PCORnet Baseline PCORnet Future
III. Capability
Evaluation
(@18 months)
I. Process Evaluation
II. Barrier/facilitator
Evaluation
CC

20. Discussion Questions
20
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?

21. Next Steps for Developing Core Research
Capabilities
Engelberg Center for Health Care Reform
The Brookings Institution • Washington, DC
January 21-22, 2014

22. 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?