Joe Selby MD, MPHPCORI Executive Director

8th Annual Weitzman SymposiumCommunity Health Center, IncMay 16, 2013

Transforming Health Care

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 and the dissemination of research findings with respect to the relative health outcomes, clinical effectiveness, and appropriateness of medical treatments, services.

Purpose

Of

PCORI

PCORI’s Broad Mandate

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PCORI’s Board of GovernorsP3

PCORI Board of Governors, March 2012 in Baltimore, MD

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What Does PCORI Mean By Patient-Centeredness?

Does the proposed research compare 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, including health, health-related quality of life, function, symptoms, safety from medical harm, survival and satisfaction with care?

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PCORI’s Mission – Through Engagement

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.

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PCORI’s Rationale for Engagement

Advise Us on what PCORIShould Study:

Tell Us How We Are Doing

Review Proposals andPartner in Research

Help Us Share the Findings

Patientsand

Stakeholders

• Topic generation• Research prioritization

Merit Review Participate in research

How can we improve on what we are doing and how we are doing it?

Dissemination

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PCORI Review Criteria

1.Impact of the condition on the health of individuals and populations – burden in terms of prevalence, suffering, costs

2.Potential for the study to improve healthcare and outcomes – likelihood that this study’s findings could change current practice

3. Technical merit – research plan, analytic methods, research team, environment

4. Patient-Centeredness - relevance of the study question and the outcomes to patients

5. Patient and stakeholder engagement – inclusion of relevant patients and stakeholders on research team

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PCORI Funding – Approximate

2012

2013

2014

2015. . . .

2019

$150,000,000*

$300,000,000

$500,000,000

$500,000,000

$500,000,000

* 20% each year goes to AHRQ/HHS

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PCORI’s National Priorities and Research Agenda

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Assessment of Prevention, Diagnosis, Treatment Options• Comparisons of alternative clinical options; identifying patient differences in response to

therapy; studies of patient preferences for various outcomes

Improving Healthcare Systems• Improving system support of patient self-management, coordination of care for complex

conditions, 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

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Improving Healthcare Systems –from PCORI’s Funding Announcement

Research that compares alternative system-level approaches to improving:

- patients’ access to care; - receipt of appropriate evidence-based care; - quality of care; - decision-making based on personal values; - coordination of care across healthcare settings, the efficiency of healthcare delivery.

Strategies of interest include, but are not limited to:

novel applications of health information systems, incentives directed at clinicians, patients and systems;

payment reforms, such as value-based purchasing, bundled payments and accountable care

organizations; reconfigurations (redesign) of care, such as the patient-

centered medical home; new and extended roles for allied health professionals

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Addressing Health Disparities –from PCORI’s Funding Announcement

Research that compares:

Interventions to reduce or eliminate disparities in patient-centered outcomes, including health, healthcare, and patient-reported outcomes.

practices that address contextual factors such as socioeconomic, demographic, or community factors and their impact on patient-centered health outcomes. 

benefits and risks of treatment, diagnostic, prevention, or serviceoptions across different patient populations.

strategies to overcome patient, provider, or systems level barriers (e.g.,language, culture, transportation, homelessness, unemployment, lack of family/caregiver support)

best practices within various patient populations for information sharing and shared decision-making.

Addresses practical questions – especially those of interest to patients and providers – usually head-to-head comparisons

Conducted in “typical” patients and “typical” care delivery settings

Considers the full range of outcomes of interest to patients and clinicians

Considers possible differences in treatment effectiveness in patient subgroups – what works for whom?

May be RCTs or observational studies

But NOT cost-effectiveness or cost comparison studies

Comparative Clinical Effectiveness Research – PCORI Style

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PCORI’s Broad Solicitations for Research Funding

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#1: Investigator-Generated Pathway – “BROAD”

Diverse portfolio addressing high-priority questions

PCORI Projects Involving CHC’s

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• Pilot Project: Tucson, Arizona

Integrating and Comparing Community-Based Participatory and Conjoint Analysis

• Pilot Project: Los Angeles, California

A Modified Delphi Approach to Defining a Patient-Centered Community Health Center

• Pilot Project: Boston, Massachusetts

Developing an Analytic Tool to Assess Patient Responses

• Addressing Disparities Cycle I: Tuscaloosa, Alabama

Reducing Disparities with Literacy-Adapted Psychosocial Treatments for Chronic Pain

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A Modified Delphi Approach to Defining a Patient-Centered Community Health Center (Pilot Project)

Primary Investigator and Institution: Robin Clarke, MD University of California, Los Angeles

Award Amount: $307,985

Description: Evaluates the theories, evidence, and practices of enabling services, such as providing transportation to appointments, conducting case management assessments, or performing community outreach. Goals of the study are to: Define a specific standard of care for each category of enabling service that will

facilitate active investigation of how these patient-centered services affect the health care delivered to underserved patients.

Improve the implementation, diffusion, and reimbursement of enabling services. Reshape how the existing patient-centered medical home paradigm applies to

practices caring for low-income patients.

Featured Project Strength: Creates a new research method that incorporates community health

center providers and patients to define what the standards of care are for these services.

Addresses barriers to care that affect approximately 25 million Americans.

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Engaging Stakeholders to Improve Depression Management in a Tribal Health System (Pilot Project)

Primary Investigator and Institution: Renee Robinson, PharmD, Southcentral Foundation

Award Amount: $604,301

Description: Project will develop, test, and refine a tool to support decision making within a tribally-owned health care organization, using depression as example condition. There are three specific aims: Identify stakeholder preferences and needs that influence depression treatment

decisions in Alaska Native and American Indian people. Develop a tool to help translate and integrate evidence-based guidelines, and

stakeholder preferences and needs into depression management decisions. Determine impact of the stakeholder-centered tool on health, service utilization, and

outcomes.

Featured Project Strengths: Studies an issue with high prevalence in an underserved community. The results will be applicable to other chronic health concerns, and other

racially and ethnically diverse populations with persistent health disparities.

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Cycle I Awards

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• Assessment of Prevention, Diagnosis and Treatment Options: Ann Arbor, Michigan

Selection of Peritoneal Dialysis or Hemodialysis for Kidney Failure: Gaining Meaningful Information for Patients and Caregivers

• Communication and Dissemination Research: Jacksonville, Florida

Shared Medical Decision Making in Pediatric Diabetes

• Communications and Dissemination Research: University Heights, Iowa

Extension Connection: Advancing Dementia Care for Rural and Hispanic Populations

• Assessment of Prevention, Diagnosis and Treatment Options: Rochester, Minnesota

Shared Decision Making in the Emergency Department: The Chest Pain Choice Trial

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Reducing Health Disparities in Appalachians with Multiple Cardiovascular Disease Risk Factors

Primary Investigator and Institution: Debra Moser, DNSc, RN, FAAN Kentucky University

Award Amount: $2,092,473.60

Description: Compares the effects of two approaches in reducing risk of cardiovascular disease. Comparison is between the current standard of care and the standard of care supplemented by culturally appropriate self-care tools. Examines four-month and one year impact of various measures, including tobacco

use, blood pressure, BMI, and the number of recruited people who stay with the program.

Study involves 300 individuals from Appalachian Kentucky who do not have a primary care provider, and otherwise are not able to receive the standard of care without intercession, and are at risk by having two or more modifiable risk factors. factors.

Featured Project Strengths: This study will have a substantial impact on cardiovascular health

because it will provide needed patient-centered risk reduction to a major at-risk population living in an environment where risk reduction is difficult.

The potential for application to other environments and high-risk populations is high.

Debra Moser

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Creating a Clinic-Community Liaison Role in Primary Care: Engaging Patients and Community in Health Care Innovation

Primary Investigator and Institution: Clarissa Hsu, PhD Group Health Cooperative

Award Amount: $1,564,384

Projected Completion Date: December 31, 2015

Description: Works with patients to design role for a clinic-community liaison to link healthcare clinics with community. Strategy aims to increase patients’ ability get what they need from both their community and their healthcare. The specific goals are to: Create new ways to involve patients in designing their own healthcare by

developing processes and tools to help patients contribute ideas for how care should be designed.

Design and test a new clinic-community liaison role for primary care teams by focusing on the prevention and treatment of chronic conditions.

Featured Project Strengths: This project follows up on an extremely promising intervention, drawing

upon existing data and methodologies. It is highly patient centered and focused on "real-world" perspective.

Clarissa Hsu

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Location of PCORI’s First 104 Awards

Total: 124About Tableau maps: www.tableausoftware.com/mapdata

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PCORI Engagement Awards

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Purpose

Build community

Form or strengthen reciprocal relationships between researchers and non-research communities

Support capacity building, co- learning, and the development of a sustainable infrastructure to facilitate “research done differently”

Accelerate proposal submission (or re-submission)

 

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PCORI Engagement Awards – coming July 2013

Proposed by participants at October 2012 Transforming Patient-Centered Research patient engagement workshop

Intended to provide resources to non–research entities for community development, capacity building, or for infrastructure development for engagement in research as partners.

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Design

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Pre-Engagement/Community-Building Projects (Up to $15,000 for 6 months)

Available to individuals, consumer/patient organizations, clinician(s) or researcher(s) or a combination of the above to support:

Community building

Creation of structure and communication strategies

Develop an understanding of PCORI, and “research done differently”

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Partnership and Infrastructure Development Projects (Up to $30,000 for 1 year)

Available to emerging research/non-research partnerships to support:

Data network development

Development of infrastructure

Generation of research questions through community events, town hall meetings, etc.

Minimum 50% of funds go to non research partner(s)

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Proposal Development Projects(Up to $50,000 for 1 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

Research partnership skill development

Minimum 50% of funds go to non research partner(s)

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Connect with PCORI

www.pcori.org

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