engaging patients and improving the shared decision-making process
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Engaging Patients and Improving the Shared Decision-Making Process
March 28, 2013
For Audio: Dial-in#: 866.394.2346 Participant Code: 397 154 6368#
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Welcome & Overview- 5 mins Engaging Patients and
Improving the Shared Decision-Making Process – 35 mins
Discussion on Shared Decision-Making Process, 15 mins
Wrap-up & Evaluation, 5 mins
Michael Hagerin+care Campaign ManagerNational Quality CenterNew York, NYmichael@nationalqualitycenter.org
Conversation opportunities throughout webinar
Agenda
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For more information: www.incarecampaign.org
This Partners in+care webinar is offered as part of the in+care Campaign.
The in+care Campaign is a national effort to improve retention in HIV care.
Webinars are one of many Partners in+care activities designed to engage people living with HIV/AIDS and their allies in the in+care Campaign.
Welcome & Overview
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This is a “public event.” If you have confidentiality concerns:
Your names appear on-line in the list of webinar registrants -consider just listening to the audio or to viewing the webinar at a later time, after it is posted at www.incarecampaign.org
All webinars are recorded - do not use identifying information when asking questions
Participation Guidelines
For Audio: Dial-in#: 866.394.2346 Participant Code: 397 154 6368#
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Actively participate and write your questions into the chat area during the presentation; we will also have a “pop up” question exercise, and will pause for conversation during the webinar
Do not put us on hold Mute your line if you are not speaking (press
*6, to unmute your line press #6) The slides and recording of this and other
Partners in+care webinars are available for playback and group presentations at www.incarecampaign.org – “Resources” tabFor Audio: Dial-in#: 866.394.2346 Participant Code: 397 154 6368#
Participation Guidelines
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Visit www.incarecampaign.org
Pop-up Question
I am not ready to get involved in this type of work / We do not have patients ready to engage in this type of workI am very concerned about my / my patients’ confidentiality and privacyWhat are you talking about? This is great! Let’s do it!I have no opinion…
Patient Involvement
What barriers do you foresee in engaging patients directly in
research or evaluation projects? (check all
that apply)
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Engaging Patients and Improving the Shared Decision-Making Process
• Overview of the Patient-Centered Outcomes Research Institute (PCORI)
• What is Patient-Centeredness
• Overview of PCORI Methodology
• Review of Current PCORI Projects
Suzanne Schrandt, J.D.Deputy Director, Patient Engagement
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Engaging Patients and Improving the Shared Decision-Making Process
Suzanne Schrandt, J.D.
Deputy Director of Patient Engagement
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About PCORI
An independent non-profit research organization authorized by Congress as part of the 2010 Patient Protection and Affordable Care Act (ACA).
Committed to continuously seeking input from patients and a broad range of stakeholders to guide its work.
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Our Mission and Vision
MissionThe Patient-Centered Outcomes Research Institute (PCORI) helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community.
VisionPatients and the public have the information they need to make decisions that reflect their desired health outcomes.
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PCORI’s Board of Governors Represents the Entire Health Care Community
PCORI Board of Governors, March 2012 in Baltimore, MD
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PCORI’s Core Duties
Establish national research priorities
Establish and carry out a research agenda
Develop and update methodological standards
Disseminate research findings
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PCOR Defined
Patient-Centered Outcomes Research (PCOR) helps people and their caregivers communicate and make informed health care decisions,
allowing their voices to be heard in assessing the value of health care options.
“Given my personal
characteristics, conditions and preferences, what should I
expect will happen to me?”
“What are my options and what are the potential
benefits and harms of those
options?”
“What can I do to improve the
outcomes that are most
important to me?”
“How can clinicians and the
care delivery systems they
work in help me make the best
decisions about my health and healthcare?”
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What is Patient-Centeredness?
Does the proposed research compare the effects of treatment options that matter to patients? Are these realistic choices faced by patients or other
decision-makers?
Does the research focus on outcomes of interest to patients and their caregivers? Outcomes of interest might include: health, health-
related quality of life, functioning, symptoms, safety from medical harm, survival and satisfaction with care.
Tell us what PCORI should study
Review proposals and partner in research
Tell us how we are doing
Help us share research findings
Engagement
Tell us what PCORI Should Study
I want to know which diabetes treatment won’t
slow me down?
How can I help my patients make better informed decisions?
How do I help my employees stay healthy and productive?
How is my home and environment affecting my child’s asthma?
Submit your questions online: www.pcori.org/questions
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Review Research Proposals
PCORI invites professional and lay audiences to be reviewers of research applications
Help us support research that will be both scientifically rigorous and truly patient-centered
Learn more and apply online: www.pcori.org/get-involved/reviewers/
Partner in Research
The engagement of patients and stakeholders should include:
Participation in formulation of research questions
Defining essential characteristics of study participants, comparators, |and outcomes
Monitoring of study conduct and progress
Dissemination of research results
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PCORI’s First Advisory Panels
Will include clinicians, researchers, patients, and other experts with appropriate experience and knowledge to help PCORI achieve its goals
Will assure meaningful patient engagement in: Research activities Identifying research priorities and topics Conducting randomized clinical trials Performing special research studies
Board Approval of Advisory Panel Members: March 26, 2013
Advisory Panel Kickoff and Training in Washington, DC: April 19-20, 2013
Addressing Disparities.
Assessment of Prevention,
Diagnosis, and Treatment
Options
Improving Healthcare Systems
Patient Engageme
nt
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From Priorities to Research Patients Can Use
Future priorities and agendas will be informed by the development process, ongoing stakeholder engagement, and PCORI’s research results.
Priorities
Research Agenda
Funding Research
Results and Dissemination
National Priorities for Research and Research Agenda
Assessment of Prevention, Diagnosis, and Treatment Options
• Comparisons of alternative clinical options to support personalized decision-making and self-care• Identifying patient differences in response to therapy• Studies of patient preferences for various outcomes
Improving Healthcare Systems
• Improving support of patient self-management• Focusing on coordination of care for complex conditions and improving access to care• Comparing alternative strategies for workforce deployment
Communication & Dissemination Research
• Understanding and enhancing shared decision-making• Alternative strategies for dissemination of evidence• Exploring opportunities to improve patient health literacy
Addressing Disparities
• Understanding differences in effectiveness across groups• Understanding differences in preferences across groups• Reducing disparities through use of findings from PCOR
Accelerating PCOR and Methodological Research• Improving study designs and analytic methods of PCOR• Building and improving clinical data networks • Methods for training researchers, patients to participate in PCOR• Establishing methodology for the study of rare diseases
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PCORI Review Criteria
1. Impact of the Condition on the Health of Individuals and Populations
2. Potential for Improving Care and Outcomes
3. Effects on Health Care Delivery
4. Patient-Centeredness
5. Rigorous Research Methods
6. Inclusiveness of Different Populations
7. Research Team – Engagement
8. Efficient Use of Research Resources
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Methodology Standards
Standards for Formulating
Research Questions
Standards Associated with
Patient-Centeredness
Standards for Systematic
Reviews
General and Crosscutting
Methods For All PCOR
Causal Inference Standards
Standards for Heterogeneity of Treatment Effect
(HTE)
Standards for Preventing and
Handling Missing Data
Standards for Data
Networks
Standards for Adaptive and Bayesian Trial
Designs
Standards for Data
Registries
Standards for Studies of
Diagnostic Tests
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PCORI’s Research Portfolio: 50 Pilot Projects
Advance the field of patient-centered outcomes research
Support the identification of methodologies
Identify gaps where methodological research needs further development
ApprovedApril 25, 2012 50 projects
24 states $31 million
Patient Engagement and Shared Decision-Making: Pilot Projects
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Development of a Supported Decision-Making Tool for Persons with Chronic Illness
• New Haven, Connecticut
Decision Support for Symptom and Quality of Life Management
• Boston, MA
Methods for Analysis of Decision-Related Communication in Outpatient Care
• Providence, Rhode Island
Understanding Patient Preferences for Informed Decision Making
• Richmond, Virginia
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6 Communication and Dissemination Research
6 Improving Healthcare Systems
25 Total
9 Assessment of Prevention, Diagnosis, and Treatment Options
4 Addressing Disparities
Inaugural PFA Funding Cycle Totals (Cycle I)Slate of Awards Selected December 18, 2012
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PCORI’s Research Portfolio: 25 Projects Funded in PFA Cycle I
Patient Engagement and Shared Decision-Making: Cycle I Awards
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Selection of Peritoneal Dialysis or Hemodialysis for Kidney Failure: Gaining Meaningful Information for Patients and Caregivers
• Assessment of Prevention, Diagnosis and Treatment Options Cycle I: Ann Arbor, Michigan
Shared Medical Decision Making in Pediatric Diabetes
• Communication and Dissemination Research Cycle I: Jacksonville, Florida
Cultural Tailoring of Educational Materials to Minimize Disparities in HPV Vaccination
• Addressing Disparities Cycle I: Denver, Colorado
Shared Decision Making in the Emergency Department: The Chest Pain Choice Trial
• Assessment of Prevention, Diagnosis and Treatment Options Cycle I: Rochester, Minnesota
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Key Characteristics of Funded Projects
Patient-Centeredness – Is the proposed research focused on questions and outcomes of specific interest to patients and their caregivers?
Innovation & Potential for Improvement – Might the proposed research lead to meaningful improvement in patient health and is the approach novel or innovative in ways that make it likely to change practice?
Team & Environment – Do the researchers have appropriate experience and have they included in their team the relevant patients and other key healthcare community members, who are the focus of the study and would use its information?
Two Paths to Research Funding
Investigator Generated
PCORI issues broad funding announcements
Researchers partner with patients and stakeholders to generate questions
Researchers, stakeholders apply review criteria in their applications
Peer review prioritizes applications by level of alignment with criteria
Patient/Stakeholder Generated
PCORI and stakeholders generate and prioritize questions based on review criteria
PCORI issues specific funding announcements for highest priority topics
Researchers partner with patients and stakeholders to develop proposals
Peer review prioritizes applications by level of alignment with criteria
Diverse research portfolio answering key questions for patients and clinicians
PCORI’s First Targeted Research Topics
Identified several high-priority, stakeholder-vetted topics for targeted PFAs
Jumpstarts PCORI’s long-term topic generation and research prioritization effort
Leverages stakeholder input from before PCORI’s existence
Allows us to build on our engagement work
Research Topics:
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Current Funding Opportunities
PCORI Funding Announcements
PCORI Challenge
PCORI Funding Announcements (PFAs)
PCORI Funding Announcements (PFAs) are issued to support a portfolio of comparative clinical effectiveness research based on PCORI’s National Priorities for Research and Research Agenda.
www.pcori.org/funding-opportunities
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Cycle I Cycle II Cycle III
Online system open May 15 Sep. 17 Jan. 15
LOI Due Jun. 15 Oct. 15 Feb. 15
Application Deadline Aug. 15 Dec. 15 Apr. 15
Awards Announced Dec. – Jan. Apr. – May Aug. – Sep.
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PCORI Challenge
Competition to create a system for connecting healthcare researchers and patient partners to advance patient-centered comparative effectiveness research
Prizes: Conceptual Model - $10,000 Prototype - $40,000
Key Dates: December 14, 2012 - Submission period begins April 15, 2013 - Submission period ends May 15, 2013 - Winners notified Spring 2013 - Winners announced at a national health conference
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Connect with PCORI
www.pcori.org
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Let us know your experiences in the chat room!
How is your clinic currently improving patient involvement
in direct care?
Engaging Patients and Improving the Shared Decision-Making Process
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Let us know your experiences in the chat room!
What change is needed to ensure that patients are
involved in their treatment decisions?
Engaging Patients and Improving the Shared Decision-Making Process
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