What Should PCORI Study? A Call for Topics from Patients and - - PowerPoint PPT Presentation

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What Should PCORI Study? A Call for Topics from Patients and - - PowerPoint PPT Presentation

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What Should PCORI Study? A Call for Topics from Patients and Stakeholders December 4, 2012 TWITTER: #PCORI EMAIL: getinvolved@pcori.org Joe Selby, MD, MPH, Executive Director PCORI What Should PCORI Study? A Call for Topics from Patients

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What Should PCORI Study? A Call for Topics from Patients and Stakeholders

December 4, 2012 TWITTER: #PCORI EMAIL: getinvolved@pcori.org

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Joe Selby, MD, MPH, Executive Director PCORI

What Should PCORI Study? A Call for Topics from Patients and Stakeholders TWITTER: #PCORI EMAIL: getinvolved@pcori.org

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Mission

The Patient-Centered Outcomes Research Institute (PCORI) helps people make informed health care decisions, and improves health care delivery and

  • utcomes, 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 Board of Governors Represents the Entire Health Care Community

PCORI Board of Governors, March 2012 in Baltimore, MD

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Unique role of stakeholders

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PCORI’s Two Paths to “Getting Specific” in Research Funding

October 25, 2012 6

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PCORI’s Two Paths to “Getting Specific” in Research Funding

October 25, 2012 7

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It Begins with You

P8

www.pcori.org/questions

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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: Treatment Options for Uterine Fibroids Safety and benefits of treatment

  • ptions for severe asthma

Fall Prevention in the Elderly

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Susan Hildebrandt, MA Director of Stakeholder Engagement PCORI

What Should PCORI Study? A Call for Topics from Patients and Stakeholders TWITTER: #PCORI EMAIL: getinvolved@pcori.org

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Engagement

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Tell Us What to Study

Transforming Patient-Centered Research: Building Partnerships and Promising Models

  • October 27-28, 2012
  • Washington, DC

What Should PCORI Study? A Call for Topics from Patients and Stakeholders

  • December 4, 2012
  • Washington, DC

PCORI Methodology Workshop for Prioritizing Specific Research Topics

  • December 5, 2012
  • Washington, DC
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Review PCORI Funding Applications

Help PCORI review PCORI Funding Applications Apply to be a Stakeholder or Scientific Reviewer pcori.org/get-involved/ reviewers

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Form Research Partnerships

P14

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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SLIDE 15

Help Us Spread the Word

Create Communities Engage Meaningfully Share and Adopt Information

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Tell Us How We Are Doing

PCORI

Stakeholders Patients & Caregivers Researchers

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Today’s Objectives

The purpose of this workshop is to bring stakeholder representatives together to:

§ Solicit research topics for specific funding announcements during breakout sessions on PCORI priority areas § Report on Patient Engagement Workshop participants’ reactions to PCORI’s engagement strategies and get additional input § Report on our draft prioritization process, show how a topic would move through the system, and solicit feedback on the process

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Thank You to Our Planning Committee

Andrew Baskin, Aetna Ann Caldwell, The Arc Lynne Cuppernull, Alliance of Community Health Plans Maureen Dailey, American Nurses Association Nancy Foster, American Hospital Association Andrea Garcia, Association of State and Territorial Health Officials

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Thank You to Our Planning Committee

Jennifer Graff, National Pharmaceutical Council Helen Haskell, Mothers Against Medical Errors Dan Leonard, National Pharmaceutical Council Jennifer Meeks, American Medical Association Jennifer Phillips, Alliance of Community Health Plans Sylvia Trujillo, American Medical Association

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What Should PCORI Study? A Call for Topics from Patients and Stakeholders

December 4, 2012 TWITTER: #PCORI EMAIL: getinvolved@pcori.org

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Workshop Objectives

  • Inform Participants on PCORI Mission & Research
  • Identify Best Practices in Stakeholder Engagement
  • Receive Recommendations on Topics PCORI

Should Address

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Workshop Agenda

  • 8:45 – 10:15: Engagement & Patient-Centeredness: Sharing

Perspectives with PCORI

  • 10:15 – 10:30: Break
  • 10:30 – 10:45: Introduction to Small Group Sessions
  • 10:45 – Noon: Small Group Session #1
  • Noon – 1:15: Working Lunch: Developing the PCORI Way
  • 1:15 – 1:30: Break
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Workshop Agenda

  • 1:30 – 2:45: Small Group Session #2
  • 2:45 – 3:00: Break
  • 3:00 – 4:00: Soliciting Research Topics: What Have We

Learned?

  • 4:00 – 4:45: How to Prioritize: A Real World Example
  • 4:45 – 5:00: Closing Remarks
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Workshop “Rules”

  • Keep Comments Brief So All Can Be Heard
  • Allow Facilitator Interruptions To Keep On Time
  • Don’t Distract With Phones/Email
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Small Group Breakout Sessions

  • Introductions & Orientation
  • Recommendations for Research Topics
  • How Organizations Use COR
  • Best Practices
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Engagement and Patient-Centeredness: Sharing Perspectives with PCORI

8:45 - 10:15 am TWITTER: #PCORI EMAIL: getinvolved@pcori.org

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What Should PCORI Study? A Call for Topics from Patients and Stakeholders

December 4, 2012 TWITTER: #PCORI EMAIL: getinvolved@pcori.org

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Introduction to Facilitated Small Group Sessions

10:30 – 10:45 am TWITTER: #PCORI EMAIL: getinvolved@pcori.org

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What Should PCORI Study? A Call for Topics from Patients and Stakeholders

December 4, 2012 TWITTER: #PCORI EMAIL: getinvolved@pcori.org

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Research Prioritization: “Developing the PCORI Way”

Rachael Fleurence, PhD

PCORI Scientist

TWITTER: #PCORI EMAIL: getinvolved@pcori.org

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Getting to Specificity: Identifying Questions

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Topic Generation

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Getting to Specificity: Identifying Questions

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Workshops Guideline Developers National Priorities IOM 100

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Topic Generation

Getting to Specificity: Confirming Research Gaps

Gap Confirmation

Research Opportunities

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Topic Generation

Getting to Specificity: Prioritizing Research Questions

Gap Confirmation

Research Opportunities

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Research Prioritization

Research Prioritization

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Topic Generation

Getting to Specificity: Creating Funding Announcements

Gap Confirmation

Research Opportunities

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Research Prioritization

Research Prioritization

Final Selection for Specific PFAs

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Principles to Guide Us: Patients ask for Transparency, Efficiency, Collaboration

Transforming Patient- Centered Research: Building Partnerships and Promising Models

Washington DC, October 27-28, 2012

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Getting to Specificity: PCORI’s Progress and Plan for 2013

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Aug 2012 Sep Oct Nov Dec Jan 2013 Feb Mar 2013 Initial process developed Technical Working Group feedback Pilot Methods Workshop Advisory Panel training on Research Prioritization Methods Advisory Panels implement and submit results to Board

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Piloting the Process

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  • Piloted from August to November

2012

  • 35 Pilot participants
  • 8 criteria to prioritize 10 topics
  • Results
  • Feedback
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Composition of the Pilot Group: Primary Identity

Clinician Patient/Caregiver Advocacy Organization Payer Training Institution Patient/Consumer Caregiver/Family Member Research

17.9% 10.7% 7.1% 7.1% 3.6% 3.6%

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50.0%

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But Pilot Participants Wear Many Different Hats…

Other Policy Maker Training Institution Research Industry Payer Purchaser Clinic/Hospital/ Health System Clinician Patient/Caregiver Advocacy Organization Caregiver/ Family Patient/ Consumer 71.0% 6.5% 12.9% 3.2% 16.1% 41.9% 12.9% 35.5% 48.4%

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6.5% 0.0% 16.1%

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Building on the Existing Evidence Base and Prior Experience

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Existing Scientific Work and Literature Methodology Committee and Methodology Report Experience of Other Agencies

Federal Coordinating Council for Comparative Effectiveness Research

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Original PCORI Criteria for Research Prioritization Process

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Questions to Pilot from a Diverse Range of Disease Areas

Obesity Back Pain in the Elderly Indoor Air Pollution Falls in the elderly Prostate Cancer

Anti- psychotics in Young Adults

Breast Cancer Coronary Artery Disease

Clostridiu m Difficile

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Pilot Groups used 2 Different Tools to Prioritize

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Survey Gizmo

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Expert Choice – Topic Ranking

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Group 1 Results Using Two Softwares

0.00% 2.00% 4.00% 6.00% 8.00% 10.00% 12.00% Indoor air pollution interventions Effectivenss of multiple chronic conditions Mindfulness-based interventions and Treatment for C. difficile diarrhea Efficacy of antipsychotics in Prevention of falls in the elderly Management of elderly patients with back pain Treatment of ductal carcinoma in situ (DCIS) Biomarkers for the prevention of breast Treatment of coronary artery disease 7.30% 8.79% 9.55% 9.64% 9.99% 10.20% 10.52% 11.03% 11.21% 11.77%

Expert Choice Survey Gizmo

67 137 145 145 152 156 177 199 201 216 50 100 150 200 250 Indoor Air Pollution Obesity Preventing Falls Multiple Chronic Conditions Antipsychotics in ADHD, bipolar disorder or Diarrheal Infection Clostridium Difficile Treatment of Ductal Carcinoma In Situ Management of Back Pain in Elderly Patients Biomarkers for Breast-Cancer Coronary Artery Disease Total Score

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Group 2 Results

48 0.00% 2.00% 4.00% 6.00% 8.00% 10.00% 12.00% Indoor air pollution interventions Treatment for C. difficile diarrhea Effectivenss of multiple chronic conditions Efficacy of antipsychotics in adolescents and children Mindfulness-based interventions and obesity Management of elderly patients with back pain Biomarkers for the prevention of breast cancer Prevention of falls in the elderly Treatment of coronary artery disease Treatment of ductal carcinoma in situ (DCIS) 7.28% 9.07% 9.49% 9.53% 9.89% 9.94% 10.69% 10.74% 11.41% 11.96%

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Participants Provided Valuable Insights to Improve the Process

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Emphasize Patient’s Voice Clarify the Criteria Improve Supporting Information Choose the Tools

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  • 1. Patient-Centeredness

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  • Are patients and clinicians

asking for this research ?

  • Will research findings make a

difference to patients and their clinicians when making health care decisions ?

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  • 2. Impact on Population and Individual

Health

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  • Burden of disease in terms
  • f prevalence, mortality,

morbidity, individual suffering, loss of productivity?

  • Rare disease?
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  • 3. Differences in Benefits and Harms, And

Reduction in Uncertainty

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  • Indications of differences in

benefits and harms sufficient to warrant conducting new research?

  • Does current evidence suggest

uncertainty regarding treatment effectiveness and a need for additional evidence?

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  • 4. Implementation in Practice

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How likely is it that the research findings will be implemented in practice?

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  • 5. Duration of Information

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  • Will research findings be

valid by the time the study has concluded?

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Radiation Therapy for Prostate Cancer

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Patient centeredness Impact on population and individual health Differences in benefits and harms and reduction in uncertainty Implementation in practice Duration of information

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Next Steps

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  • Revisions
  • Implementation
  • Learning from ARRA
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Launching PCORI’s Research Prioritization Process

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From Research Questions to Research Studies

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Acknowledgements

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What Should PCORI Study? A Call for Topics from Patients and Stakeholders

December 4, 2012 TWITTER: #PCORI EMAIL: getinvolved@pcori.org

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Soliciting Research Topics: What Have We Learned?

3:00 – 4:00 pm TWITTER: #PCORI EMAIL: getinvolved@pcori.org

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What Should PCORI Study? A Call for Topics from Patients and Stakeholders

December 4, 2012 TWITTER: #PCORI EMAIL: getinvolved@pcori.org

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How to Prioritize: A Real World Example

Kara Odom Walker, MD, MPH, MSHS

PCORI Scientist

TWITTER: #PCORI EMAIL: getinvolved@pcori.org

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A Real World Question

  • Mr. Jones is 77 years old and

has several medical conditions, including diabetes and congestive heart failure Over the Thanksgiving holiday, he experienced chest pain and they rushed to the hospital The doctors presented several treatment options to both Mr. and his wife

  • Mr. Jones listens to the doctors

but wonders about making the right choice?

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Topic Generation

Getting to Specificity: A Multi-Step Process

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What is the best treatment for my husband’s coronary heart disease, given his

  • ther medical conditions?

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Other Questions Also Come from a Diverse Range of Disease Areas

Obesity Back Pain in the Elderly Indoor Air Pollution Falls in the Elderly Prostate Cancer

Anti- psychotics in Young Adults

Breast Cancer Coronary Artery Disease

Clostridium Difficile

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Topic Generation

Getting to Specificity: A Multi-Step Process

Gap Confirmation

Research Opportunities

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For Example: Treatment of Coronary Heart Disease

Evidence:

§ Unknown whether coronary bypass surgery, percutaneous interventions including stents, or medical management are the best option for patients like Mr. Jones, given his preferences, and medical conditions § More research is needed to help with decision making

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Topic Generation

Getting to Specificity: A Multi-Step Process

Gap Confirmation

Research Opportunities

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Research Prioritization

Research Prioritization

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Original PCORI Criteria for Research Prioritization Process

Patient centeredness Impact Differences in benefits and harms Reduction in uncertainty Implementation in practice Duration of information Healthcare system performance Inclusiveness of different populations

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  • 1. Patient-Centeredness

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  • Are patients and clinicians

asking for this research?

  • Will research findings make a

difference to patients and their clinicians when making health care decisions?

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SLIDE 71
  • 2. Impact on Population and Individual

Health

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  • Burden of disease in terms
  • f prevalence, mortality,

morbidity, individual suffering, loss of productivity?

  • Rare disease?
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SLIDE 72
  • 3. Differences in Benefits and Harms, And

Reduction in Uncertainty

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  • Indications of differences in

benefits and harms sufficient to warrant conducting new research?

  • Does current evidence suggest

uncertainty regarding treatment effectiveness and a need for additional evidence?

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SLIDE 73
  • 4. Implementation in Practice

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How likely is it that the research findings will be implemented in practice?

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  • 5. Duration of Information

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  • Will research findings be

valid by the time the study has concluded?

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Who Ranks? Composition of the Pilot Group

Other Policy Maker Training Institution Research Industry Payer Purchaser Clinic/Hospital/ Health System Clinician Patient/Caregiver Advocacy Organization Caregiver/ Family Patient/ Consumer

71.0% 6.5% 12.9% 3.2% 16.1% 41.9% 12.9% 35.5% 48.4%

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6.5% 0.0% 16.1%

“With Which of the Following Communities Do You Identify? (Select All That Apply)” N = 31

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Voting for Topics

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Different Tools

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Sample Results: Comparing Lists from Expert Choice and Survey Gizmo

0.00% 2.00% 4.00% 6.00% 8.00% 10.00% 12.00% Indoor air pollution interventions Effectivenss of multiple chronic conditions Mindfulness-based interventions and Treatment for C. difficile diarrhea Efficacy of antipsychotics in Prevention of falls in the elderly Management of elderly patients with back pain Treatment of ductal carcinoma in situ (DCIS) Biomarkers for the prevention of breast Treatment of coronary artery disease 7.30% 8.79% 9.55% 9.64% 9.99% 10.20% 10.52% 11.03% 11.21% 11.77%

Expert Choice Survey Gizmo

67 137 145 145 152 156 177 199 201 216 50 100 150 200 250 Indoor Air Pollution Obesity Preventing Falls Multiple Chronic Conditions Antipsychotics in ADHD, bipolar disorder or Diarrheal Infection Clostridium Difficile Treatment of Ductal Carcinoma In Situ Management of Back Pain in Elderly Patients Biomarkers for Breast-Cancer Coronary Artery Disease Total Score

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Sample Results: Ranked Topics with Group Generated Weights

79 0.00% 2.00% 4.00% 6.00% 8.00% 10.00% 12.00% Indoor air pollution interventions Treatment for C. difficile diarrhea Effectivenss of multiple chronic conditions Efficacy of antipsychotics in adolescents and children Mindfulness-based interventions and obesity Management of elderly patients with back pain Biomarkers for the prevention of breast cancer Prevention of falls in the elderly Treatment of coronary artery disease Treatment of ductal carcinoma in situ (DCIS) 7.28% 9.07% 9.49% 9.53% 9.89% 9.94% 10.69% 10.74% 11.41% 11.96%

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Topic Generation

Getting to Specificity: A Multi-Step Process

Gap Confirmation

Research Opportunities

80

Research Prioritization

Research Prioritization

Final Selection for Specific PFAs

80

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Participants Provided Valuable Insights to Improve the Process

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Emphasize Patient’s Voice Clarify the Criteria Improve Supporting Information Choose the Tools

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Next Steps: PCORI’s Research Prioritization Process

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From Research Questions to Research Studies

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A Potential Answer for Mr. Jones

  • Mr. Jones listens to his
  • ptions from the doctors

and thinks about his choices for his heart disease He chooses the treatment with the fewest risks and the greatest long term benefits for his health

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Acknowledgements

35 Pilot Group Members PCORI’s RP Technical Working Group MC Working Group on RP PCORI staff, Board Members and MC Members NORC at University of Chicago

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What Should PCORI Study? A Call for Topics from Patients and Stakeholders

December 4, 2012 TWITTER: #PCORI EMAIL: getinvolved@pcori.org

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Anne Beal, MD, MPH, Deputy Executive Director and COO PCORI

What Should PCORI Study? A Call for Topics from Patients and Stakeholders TWITTER: #PCORI EMAIL: getinvolved@pcori.org

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What Should PCORI Study? A Call for Topics from Patients and Stakeholders

December 4, 2012 TWITTER: #PCORI EMAIL: getinvolved@pcori.org