PCORI Research: from the Legislation PATIENT ......PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE PCORI’s Path from Priorities to Research Patients can Use Future priorities and agenda

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


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


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.


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Patient Engagement

Communi-cations

Stakeholder Engagement

Patient and Stakeholder Engagement


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)


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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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


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.


Initial Scan of Other Prioritization Efforts

Source

Pre

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n

Acu

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are

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ic

Dis

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are

Pal

liat

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Car

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Car

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ion

Pat

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t En

gage

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nt

Safe

ty

Ap

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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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1. Comparing Preventive,

Diagnostic and Treatment Options

Better Decisions

Better Outcomes

From Better Information to Better Decisions

? ?

Introducing PCORI’s National Priorities for Research


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


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


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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Public Comment Period

13

• 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

http://www.pcori.org/


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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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


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


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.


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


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.

Documents

PCORI Research: from the Legislation PATIENT ......PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE PCORI’s Path from Priorities to Research Patients can Use Future priorities and agenda