Transcript Heterogeneity of Treatment Effects

Better Outcomes: Engaging Patients as Partners
– From Research to Care
Sue Sheridan
Director of Patient Engagement
AF4Q
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Overview
•
•
•
•
Overview of PCORI
What outcomes are important to patients?
What is a patient-centered healthcare system?
Patient safety case study of improving outcomes
through patient engagement and partnership
• Opportunities for patient engagement at PCORI
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About PCORI
An independent research institute authorized by
Congress through the Patient Protection and
Affordable Care Act
Funds comparative clinical effectiveness research
(CER) based on outcomes important to patients
Engages patients and other stakeholders
throughout the research process
Patient-Centered Outcomes Research
Institute (PCORI)
PCORI helps people make informed healthcare decisions, and
improves healthcare delivery and outcomes, by producing and
promoting high-integrity, evidence-based information that
comes from research guided by patients, caregivers, and
the broader healthcare community.
Who Are Our Stakeholders?
Patient/
Consumer
Purchaser
Caregiver/
Family
Member
of Patient
Payer
Clinician
PCORI
Community
Patient/
Caregiver
Advocacy
Org
Industry
Hospital/
Health
System
Policy
Maker
Training
Institution
Engagement as a Path To Useful,
High-Quality Research
Proposal Review;
Design and Conduct
of Research
Topic Selection
and Research
Prioritization
ENGAGEMENT
Evaluation
Dissemination and
Implementation of
Results
Why Engage Patients in Research?
(What do patients contribute?)
“Lived experience ” of a condition, disease or suboptimal care
Research questions that are important to patients
Outcomes important to patients such as quality of life
Focus on patient-centeredness, ethics, safety, and urgency
Connections to other patients like them, which facilitates
recruitment and dissemination of research findings
Establishing trust and a sense of legitimacy in its findings
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We Require Patient-Centeredness and
Patient and Stakeholder Engagement
Patient-Centeredness
Research questions and outcomes should reflect what is important
to patients and caregivers
Patient and Stakeholder Engagement
Patients are partners in the planning and conduct of the research
as well as the dissemination of the research results (not just
“subjects”)
Active and meaningful engagement between scientists, patients,
and other stakeholders in the research project
The Research We Fund is Guided by Our
National Priorities for Research
Assessment of
Prevention, Diagnosis,
and Treatment Options
Improving
Healthcare Systems
Addressing
Disparities
Communication &
Dissemination
Research
Accelerating PCOR
and Methodological
Research
Engagement Rubric
Patients and other stakeholders are engaged in:
Planning the Study
Conducting the Study
Disseminating the Study Results
PCOR Engagement Principles
Google Principle
Ten Things We Know to Be True:
#1. “Focus on the user and all else will follow”
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What Outcomes Are Most Important to Patients:
A Disease Model (Cochrane Synthesis)
Figure 17.1.a: Classification of clinical trial outcomes with illustration of those most important to patients
Higgins JPT, Green S (editors). Cochrane Handbook for Systematic Reviews of Interventions Version 5.1.0 [updated March 2011]. The Cochrane
Collaboration, 2011. Available from www.cochrane-handbook.org.
What Outcomes Are Most Important to
Patients: A Disease + Care Model
Freedom
from medical
injury
Humane,
empathic
patient
experience
e.g.
e.g.
infection
medication error
unsafe surgery
dignity
respect
information
collaboration
Higgins JPT, Green S (editors). Cochrane Handbook for Systematic Reviews of Interventions Version 5.1.0 [updated March 2011]. The Cochrane Collaboration, 2011.
Available from www.cochrane-handbook.org.
C. Vincent, A. Coulter Patient safety: what about the patient?
A systematic review of evidence on the links between patient experience and clinical safety and effectiveness
Cathal Doyle1, Laura Lennox1,2, Derek Bell1,2
Can We Develop an Evolved Definition of
Patient-Centered Care?
Picker Principles of Patient-Centered Care….PLUS
Safe
Physical comfort
Based on outcomes important to
Emotional support and alleviation of
patients
fear and anxiety
Evidence based
Involvement of family and friends
Activates patients to participate
Transition and continuity
Respect for patients’ values,
Access to care
preferences, and expressed needs
Coordination and integration of care
Information, communication, and
education (Honest about risks and
benefits)
What Does a Patient-Centered Healthcare
SYSTEM Look Like?
Patient-Centered Healthcare System
Patient-Centered Outcomes
Care
Healthcare
Services
Improvement
Patient-centered care
Implementation
Policy
Research
Outcomes Important to Patients
(Patients, families and communities)
Evidence
Case Study – Newborn Jaundice
P.I.C.K.
Parents of Infants and Children with Kernicterus
Patient Education Materials
P.I.C.K. Partnerships in Action:
Policy Makers
The JC, CDC, NQF
P.I.C.K. Partnerships in Action:
Nursing Organizations
P.I.C.K. Partnerships in Action:
Researchers/Pediatric Community
P.I.C.K. Partnerships in Action:
Research/Healthcare Organizations
Hospital Corporation of America
P.I.C.K. Partnerships in Action:
Research/US Government
Parent Information to Activate and Educate
P.I.C.K. Partnerships in Action:
Research/US Government
Maternal and Child Health Bureau
P.I.C.K. Partnerships in Action:
National Parent Education Campaign
US Government- Department of Health and
Human Services
Pipeline to Proposal Awards
Researchers who unsuccessfully
submitted a PFA and need to
improve proposal
Tier 1
Up to $15,000
Up to 9 month
term
Tier 2
Up to $25,000
Up to 12 month
term
Tier 3
Up to $50,000
Up to 12 month
term
PCORI Funding
Announcement
Or submissions to other
PCOR/CER Funders
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Tier I Pipeline Awards
(Up to $15,000 for up to 9 months)
Available to individuals,
consumer/patient organizations,
clinician(s), researcher(s) or a
combination of the above to
support:
 Community building around an
area of research interest to
improve outcomes for patients
 Creation of structure and
communication strategies
 Develop an understanding of
PCORI, and “research done
differently”
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Tier II Pipeline Awards
(Up to $25,000 for up to one year)
Available to emerging
research/non-research
partnerships to support:
 Data network and registry
development
 Development of infrastructure
 Generation and refinement of
research questions through
community events, town hall
meetings, etc.
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Tier III Pipeline Awards
(Up to $50,000 for up to one year)
Available to advanced
research/non-research
partnerships, including those who
submitted PCORI proposals and
were not funded, to support:
 PCORI research proposal
(re)submission focusing on
development of engagement
plan
 Research partnership skill
development
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Western Region Pilot
Thirty Awardees Announced December 2013
Creating Healthy Communities: Engaging Native American and
Spanish-Speaking Families and Sharing Family Wisdom to Reduce
Childhood Obesity
Improving the Lives of Alzheimer's Patients and their Caregivers: A
Patient Centered Statewide Approach
The Hispanic Family Asthma Outcomes Research Network
Culturally Appropriate Options for Diabetes Prevention and Care for
Low-Income Latinos
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Western Region Pilot
Thirty Awardees Announced December 2013
Establishing a Patient-Centered Research Community for Cystic Fibrosis
Sepsis Survivors Engagement Project (SSEP)
Healthy Outcomes for Older Foster Youth
Creating the Patient Centered Primary Care Council in the Highland
Hospital Adult Medicine Clinic: Strengthening Primary Care Together
Health Literacy and the Patient Perspective in Primary Care
Engaging Communities in the Fight Against Preterm Birth
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Western Region Pilot
Thirty Awardees Announced December 2013
Taking Care of Our Parents: Improving the Coordination of Care for
Elderly Community Members
Patient-Centered Transitions for Episodes of Surgical Care
Puget Sound Asthma Coalition: A Community, Clinical, and Academic
Partnership
Making Stomach Cancer a Health Priority among Asian American
Patient-Centered Outcomes for the Parkinson's Disease Community in
Wyoming
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Upcoming Webinar!
Event Date and Time:
Wednesday, November
19, 2014 - 01:00
pm to 02:00 pm EST
http://www.pcori.org/events/2014/exploring-eugenewashington-pcori-engagement-awards-program
Thank You
Sue Sheridan, MIM, MBA
Director, Patient Engagement
[email protected]
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