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

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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

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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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