Transcript Document

Engaging Patients
and Improving the
Shared DecisionMaking Process
March 28, 2013
For Audio: Dial-in#: 866.394.2346
Participant Code: 397 154 6368#
Agenda
Michael Hager
in+care Campaign Manager
National Quality Center
New York, NY
[email protected]
 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
Conversation opportunities throughout webinar
2
Welcome & Overview
 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.
For more information: www.incarecampaign.org
3
Participation Guidelines
 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
For Audio: Dial-in#: 866.394.2346
4
Participant Code: 397 154 6368#
Participation Guidelines
 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” tab
For Audio: Dial-in#: 866.394.2346
5
Participant Code: 397 154 6368#
Patient Involvement
Pop-up Question
What barriers do you foresee
in engaging patients directly
in research or evaluation
projects? (check all that apply)
I am not ready to get involved in this type of work / We do not have patients ready to engage in this type of work
I am very concerned about my / my patients’ confidentiality and privacy
What are you talking about? This is great! Let’s do it!
I have no opinion…
Visit www.incarecampaign.org
6
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
7
Engaging Patients and
Improving the Shared
Decision-Making Process
Suzanne Schrandt, J.D.
Deputy Director of Patient Engagement
8
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.
9
Our Mission and Vision
Mission
The 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.
Vision
Patients and the public have the information they need to
make decisions that reflect their desired health outcomes.
10
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
12
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?”
“How can
clinicians and the
“What are my
“What can I do to
care delivery
options and what
improve the
systems they
outcomes that
are the potential
work in help me
benefits and
are most
make the best
harms of those
important to
decisions about
options?”
me?”
my health and
healthcare?”
13
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, healthrelated quality of life, functioning, symptoms, safety from
medical harm, survival and satisfaction with care.
14
Tell us what PCORI
should study
Review proposals and
partner in research
Engagement
Tell us how we are
doing
Help us share
research findings
Tell us what PCORI Should Study
Submit your
questions online:
www.pcori.org/questions
I want to know which
diabetes treatment won’t
slow me down?
How is my home and
environment affecting my
child’s asthma?
How do I help my
employees stay healthy
and productive?
How can I help my patients
make better informed
decisions?
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/
17
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
18
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
19
Addressing
Disparities.
Assessment
of Prevention,
Diagnosis,
and
Treatment
Options
Improving
Healthcare
Systems
Patient
Engagement
From Priorities to Research
Patients Can Use
Priorities
Results and
Dissemination
Research
Agenda
Funding
Research
Future priorities and agendas will be informed by the development process,
ongoing stakeholder engagement, and PCORI’s research results.
20
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
21
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
22
Methodology Standards
Standards for
Formulating
Research
Questions
Standards
Associated
with PatientCenteredness
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
23
Standards for
Studies of
Diagnostic
Tests
PCORI’s Research Portfolio:
50 Pilot Projects
Approved
April 25, 2012
50 projects
24 states
$31 million
Advance the field of patient-centered outcomes research
Support the identification of methodologies
Identify gaps where methodological research needs
further development
24
Patient Engagement and Shared
Decision-Making: Pilot Projects
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
25
PCORI’s Research Portfolio:
25 Projects Funded in PFA Cycle I
9
Assessment of
Prevention, Diagnosis,
and Treatment Options
6
Improving Healthcare
Systems
6
Communication and
Dissemination
Research
4
Addressing
Disparities
25
Inaugural PFA Funding Cycle Totals (Cycle I)
Slate of Awards Selected December 18, 2012
Total
26
Patient Engagement and Shared
Decision-Making: Cycle I Awards
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
27
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?
28
Two Paths to Research Funding
Investigator Generated
Patient/Stakeholder Generated
PCORI issues broad funding announcements
PCORI and stakeholders generate and prioritize
questions based on review criteria
Researchers partner with patients and stakeholders
to generate questions
PCORI issues specific funding announcements for
highest priority topics
Researchers, stakeholders apply review criteria in
their applications
Researchers partner with patients and stakeholders
to develop proposals
Peer review prioritizes applications by level of
alignment with criteria
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
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
Treatment options for uterine fibroids
Treatment of severe asthma in AfricanAmericans and Hispanics/Latinos
Fall prevention in the elderly
Treatment options for chronic neck and
back pain
Obesity prevention and treatment in
diverse populations
30
Current Funding Opportunities
PCORI Funding Announcements
PCORI Challenge
31
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
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.
32
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
33
Connect with PCORI
www.pcori.org
34
Engaging Patients and Improving the Shared
Decision-Making Process
How is your clinic currently
improving patient involvement
in direct care?
Let us know your experiences in the chat room!
35
Engaging Patients and Improving the Shared
Decision-Making Process
What change is needed to
ensure that patients are
involved in their treatment
decisions?
Let us know your experiences in the chat room!
36
Partners in+care Resources
Visit Web / Open the Toolkit
www.incarecampaign.org - “Partners” tab
Sign up for Partners in+care Network
www.incarecampaign.org – “Partners” tab
Join Facebook
Send email to
[email protected] –
“Facebook” in subject line
37
Campaign Headquarters:
National Quality Center (NQC)
90 Church Street, 13th floor
New York, NY 10007
Phone 212-417-4730