PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
NHC 25th ANNUAL VOLUNTARY HEALTH LEADERSHIP CONFERENCE
Joe V. Selby, M.D., M.P.H., Executive Director
PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE –
Time for Engagement
PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
Source: Affordable Care Act. Subtitle D—Patient-Centered Outcomes Research. PUBLIC LAW 111–148—MAR. 23, 2010.
“The purpose of the Institute is to assist patients, clinicians, purchasers, and policy-makers in making informed health decisions by advancing the quality and relevance of evidence concerning the manner in which diseases, disorders, and other health conditions can effectively and appropriately be prevented, diagnosed, treated, monitored, and managed through research and evidence synthesis that considers variations in patient subpopulations.
Purpose
PCORI Research: from the Legislation
PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
MISSION STATEMENT
(finalized July 2011)
The Patient-Centered Outcomes Research Institute (PCORI) helps people to make informed health care decisions…. and to improve 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.
PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
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Patient Engagement
Communi-cations
Stakeholder Engagement
Patient and Stakeholder Engagement
PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
Director(s) of Patient Engagement
Director (DC-based): Judith Glanz (AARP Outreach; Tobacco-Free Kids Campaign);
Deputy Director (Boise, Idaho): Susan Sheridan (Parents of Infants with Kernicterus; Consumers Advancing Patient Safety)
PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
PCORI’s Path from Priorities to Research Patients can Use
Future priorities and agenda will be informed by the development process, ongoing stakeholder engagement, and PCORI’s research results.
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PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
National Priorities and Research Agenda
In
creasin
g S
pecific
ity
Must be approved before major research funding can begin:
National Priorities
Research Agenda
Individual PFAs
PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
Establishing National Priorities and a Research Agenda
• Developed over past five months:
– Reviewed previous national priority-setting processes.
– Evaluated these priorities against criteria laid out for PCORI in law.
– Informally vetted draft priorities with patients, caregivers and other stakeholders through meetings and focus groups.
PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
Initial Scan of Other Prioritization Efforts
Source
Pre
ven
tio
n
Acu
te C
are
Ch
ron
ic
Dis
eas
e C
are
Pal
liat
ive
Car
e
Car
e
Co
ord
inat
ion
Pat
ien
t En
gage
me
nt
Safe
ty
Ap
pro
pri
ate
U
se
HIT
to
imp
rove
p
t. e
xpe
rie
nce
Imp
act
of
Ne
w
Tech
no
logy
IOM 2009: Priorities for CER √ √ √ √ √ √ √ √ √
Federal Coordinating Committee for CER
√ √ √ √ √
AHRQ National Quality Strategy
√ √ √ √
AHRQ Effective Health Care Program
√ √ √ √ √ √
National Quality Forum √ √ √ √ √ √ √ √
National Prevention Council √ √
National Priorities Partnership
√ √ √ √ √ √
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PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
1. Comparing Preventive,
Diagnostic and Treatment Options
Better Decisions
Better Outcomes
From Better Information to Better Decisions
? ?
Introducing PCORI’s National Priorities for Research
PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
1. Comparing Preventive,
Diagnostic and Treatment Options
2. Improving Health Care Systems
Better Decisions
Better Outcomes
5. Accelerating PCOR and Methodological Research - Data - Training - Methods
4. Addressing Disparities
3. Communication/ Dissemination Research
Producing and delivering information to help patients and clinicians make better health care decisions
PCORI’s National Priorities for Research
PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
Impact on Health of Individuals and
Populations
PCORI Criteria – From Legislation
Improvability through Research
Inclusiveness of Different Populations
Addresses Current Gaps in
Knowledge/Variation in Care
Patient-Centeredness
Impact on Health Care System Performance
Potential to Influence Decision-Making
Rigorous Research Methods
Efficient Use of Research Resources
PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
Comparisons of alternative clinical options
Identifying patient differences in response to therapy
Studies of patient preferences for various outcomes
Improved support of patient self-management
Coordination of care for complex conditions
Improvements in the effectiveness and efficiency of care
Understanding and enhancing shared decision-making
Alternative strategies for dissemination of evidence
Alternative interventions/strategies to eliminate disparities
Improvements in alignment of decisions with preferences
Improving study designs and analytic methods of PCOR
Building and improving clinical data networks
Methods for training researchers, patients to participate in PCOR
Facilitating the study of rare diseases
Addressing
Disparities
Improving
Healthcare
Systems
Accelerating
PCOR and
Methodological
Research
Communication &
Dissemination
Research
Assessing Options
for Prevention,
Diagnosis, and
Treatment
Content of Draft Research Agenda
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PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
Public Comment Period
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• Online (pcori.org) and by mail
• Now through March 15
• “National Patient and Stakeholder Dialogue” event February 27 in Washington, DC
• Register online to participate in person or by webcast
PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
Next Steps
• Public Comment Period January 23-March 15, 2012
• Clinician Focus Groups on the draft priorities and agenda February 8-16, 2012
• National Patient and Stakeholder Dialogue February 27, 2012
• Analysis of public comment received March-April 2012
• Adoption of first National Priorities and Research Agenda April 2012
• Broad funding announcements issued May 2012
• Broad funding applications due July 2012
• Broad funding awards announced September – October 2012
• Issue conference grants to advance agenda specificity Spring 2012
• Brainstorming workshop to advance agenda specificity June 2012
• Advisory Groups formed to advance agenda specificity Summer 2012
• Targeted funding announcements issued August 2012
• Targeted funding applications due October 2012
• Targeted funding awards announced December 2012
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PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
Getting the Most Impactful Research
Broad Approach (“Bottoms Up”) Researchers
&Stakeholders Generate Questions
Researchers & Stakeholders
Apply the Criteria
Peer Review chooses Best Applications
Targeted Approach (“Top Down”)
PCORI & Stakeholders Consider Questions
and Criteria
PCORI issues targeted funding announcements
Peer Review chooses Best Applications
PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
Toward Greater Specificity Through Engagement
• Web-based engagement – e.g., online input from patients, caregivers, clinicians, others
• Social Media – e.g., crowd-sourcing methods for soliciting opinions, levels of interest
• Periodic surveys – of patients, stakeholders
• Face-to-face engagement – like today
PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
Toward Greater Specificity Through Engagement
• Workshops – time-limited, single or multi-stakeholder groups to consider individual priorities, topics within a priority, or cross-cutting themes.
• Advisory Panels – standing committees with charters, focused on specific topic (e.g., clinical trials, rare diseases, or on a priority area.)
• Conference grants – in-depth exploration of a specific topic with goal of informing a funding announcement.
PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
Moving from Broad to Targeted Agenda (hypothetical)
2012
Broad
Targeted
2015
Broad
Targeted
Proportion of Funding PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
Question for You
• What does greater specificity look like?
– Specific conditions
– Specific interventions
– Specific kinds of questions (e.g., multiple chronic conditions; care coordination)
– Some of each
PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
Summing Up
• PCORI’s Draft National Priorities and Research Agenda are posted for Public Comment now
• National Patient and Stakeholder Dialogue on February 27th
• PCORI sees value in launching initial research using broad agenda and solicitation
• Stakeholder engagement is essential in moving toward greater specificity over time
• This process of engagement is underway and will intensify in 2012
• Please send us your thoughts on how best to do this.