How Does PCORI Choose
What to Fund?
Chad Boult, MD, MPH, MBA
Director, Improving Healthcare Systems Program
August 1, 2013
What Is PCORI Looking For?
2
PCORI supports high-quality research
that produces trusted information
that will improve heal...
Which Outcomes Do Patients Care About?
3
Examples:
 Health
 Relief from symptoms
 Health-related quality of life
 Func...
How Does PCORI Select the Most
Promising Research Proposals to Support?
4
Two Parallel Solicitation Processes
Stakeholder-initiated (“targeted”) funding
announcements
 Specific questions suggeste...
Stakeholder-initiated (“Targeted”) Funding
Announcements
How we get from stakeholders’
questions to funded research
projec...
Cast a Wide Net
7
Topics submitted through PCORI’s web site
www.pcori.org/questions
Topics posed at PCORI-sponsored worksh...
Screen the Catch
8
To remove certain questions
 About cost-effectiveness
 About the causes of disease
 That do not addr...
Select the Best 10–20 Questions
9
Criteria
1. The question addresses a problem that puts a
large burden on society, or on ...
Advisory Panels Prioritize the Top 10–20
Questions
10
Advisory panels (21 people) include patients,
caregivers, stakeholde...
Criteria for Prioritizing Questions
11
1. The burden that the problem puts on society
2. The patient-centeredness of the q...
Targeted Funding Announcements
12
Following approval by PCORI’s board, PCORI
staff members write and release solicitations...
First Two Rounds
13
1. The first “targeted” funding announcements
were released earlier this summer
 Treatment Options fo...
Investigator-Generated (“Broad”) Funding
Announcements
14
PCORI’s Research Portfolio
PCORI has approved 76 awards totaling $123 million
through the first two cycles of our broad PC...
16
Get Involved
Patients, stakeholders, and researchers can
participate in this selection process at
http://www.pcori.org/...
Engagement Awards and
Pipeline to Proposal Awards
Concept Origin
Proposed by participants at October 2012 Transforming
Patient-Centered Research patient engagement workshop...
Engagement's Strategic Pillars = Three
Arms of Engagement Awards
Develop PCOR Community: Knowledge Awards will help PCORI ...
Engagement Awards
20
First Engagement Awards Opportunity:
Pipeline to Proposal Awards
21
Tier I Pipeline Awards
(Up to $15,000 for 9 months)
Available to individuals,
consumer/patient organizations,
clinician(s)...
Tier II Pipeline Awards
(Up to $25,000 for 1 year)
Available to emerging
research/non-research
partnerships to support:
 ...
Tier III Pipeline Awards
(Up to $50,000 for 1 year)
Available to advanced
research/non-research
partnerships- including th...
Three Tiers
25
Tier I Awards:
Role of Intermediate Funders
26
27
Questions?
The Power of Partnership in
Research: Improving
Healthcare Outcomes in
Underserved Communities
August 1, 2013
1
About Us
An independent non-profit research organization
authorized by Congress as part of the 2010 Patient
Protection and...
Our Mission and Vision
Mission
The Patient-Centered Outcomes Research Institute (PCORI)
helps people make informed health ...
4
Our Board of Governors Represents the
Entire Healthcare Community
PCORI Board of Governors, March 2012 in Baltimore, MD
Source: Patient
Protection and
Affordable Care Act.
Subtitle D, PUBLIC
LAW 111–148—MAR.
23, 2010.
Our Purpose – From the P...
Our Core Duties
Establish national research priorities
Establish and carry out a research agenda
Develop and update method...
What is Patient-Centeredness?
Does the proposed research compare the effects of
treatment options that matter to patients?...
National Priorities for Research and
Research Agenda
1. Assessment of Prevention, Diagnosis, and Treatment Options
•Compar...
Our Major Funding Opportunities
PCORI Funding Announcements (PFAs)
• Assessment of Prevention, Diagnosis, and Treatment Op...
Our Review Criteria
National Research
Priority Areas 1-4
• Impact of the condition on
health of individuals and
population...
Our Primary Research Portfolio
We will award more than $355 million in 2013 and upwards
of $500 million in 2014
The first ...
Research Infrastructure
Two funding announcements for up to $68 million
to support development of a National Patient-
Cent...
Building Research Infrastructure
Characteristics:
A “network of networks”
Two types of component networks:
systems-generat...
14
National Patient-Centered Clinical
Research Network: Our Vision
Steering
Committee
Scientific
Advisory
Board
Special
Ex...
Our First Targeted Research Topics
Identified several high-priority,
stakeholder-vetted topics for
targeted funding announ...
Treatment Options for African Americans and
Hispanics/Latinos with Uncontrolled Asthma
PCORI seeks to fund comparative eff...
Building Our Research Portfolio:
2013 Funding Commitments
Funding Stream LOI Deadline Application
Deadline
Anticipated
Awa...
Engagement as a Path to Rigorous
Research
18
Advise Us On What
PCORI Should Study
• What outcomes should be studied?
• Wha...
Two Paths to Research Funding
Investigator-Initiated
PCORI issues broad funding announcements
Researchers partner with pat...
Tell us what PCORI Should Study
I want to know which
diabetes treatment won’t
slow me down?
How can I help my patients
mak...
Our First Advisory Panels
21
Include clinicians, researchers,
patients, and other experts with
appropriate experience and
...
Review Research Proposals
PCORI invites professional and
lay audiences to be reviewers
of research applications
Help us su...
What roles should patients and
stakeholders play in research teams?
The engagement of patients and stakeholders should inc...
Facilitating Patient Involvement in
Research
Matching Initiative Engagement Awards
24
Engagement Awards Program to Advance
Patient-Centered Outcomes Research
25
Targeted funding to dozens of
groups of patient...
The PCORI Challenge
Patient/researcher “matching”
mechanism or system
Connect potential partners
interested in seeking fun...
The Winners!
Concept ($10,000)
“Act Together and Connect for Patient-Centered Outcomes Research
(ACTONNECT)”
Research team...
Communicating Research Results
28
DISSEMINATION IMPLEMENTATION+
Engage major patient organizations
Establish partnerships ...
The Case for Addressing the
Implementation Gap
Research + Practice
Optimal Healthcare Delivery
PCORI’s Blueprint for
Disse...
Developing the PCORI Dissemination and
Implementation Action Plan
PCORI's Blueprint for a Dissemination and Implementation...
Join us at www.pcori.org
info@pcori.org
PCORI Engagement Panel
August 1, 2013
ADDRESSING MENTAL
HEALTH NEEDS OF RURAL
AFRICAN AMERICANS
FAY W. BOOZMAN
COLLEGE OF
...
Academic & Community Team
Greer Sullivan, MD, MSPH (PI)
Mary Olson, D.Min (Community PI)
Naomi Cottoms, MA
Geoff Curran, P...
The setting: Arkansas Delta
• Primarily rural with agriculture
based economy
• Characterized by:
• Poor economic condition...
Mental Health in the Delta
• Poorer self-reported mental
health
• Increased levels of frequent mental
distress (BFRSS)
• P...
Two Different Ways to Obtain
Community Perspectives
• Focus Groups
• Researcher identifies stakeholders
• Researcher creat...
Mental Health vs. Emotional Wellness
No one is going to talk to you about mental
health. When people hear mental health th...
Where are we now?
• Completed 6 Focus Groups (n=50)
• Faith community
• College students and administrators
• Patients
• P...
Where are we now?
Preliminary analysis
• Stigma and low mental health literacy major barriers to care
• Importance of “rea...
Where are we going?
Potential Outcomes/Interventions
• Mental Health Awareness Campaign
• Peer Based Mental Health Service...
PCORI Engagement Panel
August 1, 2013
ADDRESSING MENTAL
HEALTH NEEDS OF RURAL
AFRICAN AMERICANS
FAY W. BOOZMAN
COLLEGE OF
...
Getting to a Patient-Centered
Comparative Effectiveness
Research Question
Susan Hildebrandt, MA
Director, Stakeholder Enga...
PCOR Defined
Patient-Centered Outcomes Research (PCOR) helps
people and their caregivers communicate and make
informed hea...
How PCORI Defines Comparative
Effectiveness Research (CER)
Compares two or more health and healthcare choices faced by
pat...
The Simplest Explanation
Treatment
A
Treatment
B
45
The Simplest Explanation
-
-
46
TreatmentA
Preferences
Characteristics
Risks
Side Effects
TreatmentB
Preferences
Character...
Getting to the Comparative Question
47
Am I taking the right blood
pressure medication?
What are the side effects and
bene...
Questions Outside our Scope of Work
Cost Effectiveness: PCORI will consider the measurement
of factors that may differenti...
We Are Pleased to Present…
Reducing Disparities with Literacy-Adapted
Psychosocial Treatments for Chronic Pain: A
Comparat...
Patient-Centered Research:
What Does It Look Like?
Beverly E. Thorn, Ph.D., ABPP
bthorn@ua.edu
Toya T. Burton, D.C., MPH
T...
More specifically, how did we get to
where we are?
Examined PCORI Patient-centered
Principles
• Help patients and providers make more informed
health care decisions.
• Facil...
Clinical Relevance +Translational and
“Real-World” Application of Product
• Thorn, B. E. (2004).
Cognitive Therapy for
Chr...
Cognitive-Behavioral Chronic
Pain Trial Among Rural
Minorities and non-
Minorities
Thorn et al., (2011). Randomized trial ...
Solicited Patient Input
• Key informant interviews – targeted individual
patients following initial treatment phase (follo...
Hearing the Patient Voice
Translational Behavioral
Medicine 2011;1:216–
223.
Our Patient-Centered Research Questions
If I have chronic pain….
1) “What are my options for treating my pain, and what
ar...
How Did We Translate Them Into These
Testable Research Questions?
1. In patients with chronic pain receiving care at a
FQH...
To Determine Our Testable Research
Questions:
• Met individually with willing practitioners
• Developed a small (pre-propo...
Established Relationships with
Community Collaborators
The “Practitioner” as Research Partner
Two-year clinical relationship with researcher helped
with:
• Trust issues around p...
Practitioners Concerns
• Help patients rely less on pain medications &
focus more on chronic disease self-
management
• Ce...
Practitioners Concerns
• What will you do for the control group
(medical treatment as usual)
Practitioner Concerns
• What will you do for our Spanish-speaking
patients?
What does Engaging in this kind of
research Mean to WHS as
Stakeholder?
• Largest collaboration so far
• Prompted desire t...
In Conclusion
• Patient-centeredness
• Applies to real world
• (hopeful) Reduced
practitioner burden
• (planned) Sustainab...
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The Power of Partnership in Research: Improving Healthcare Outcomes in Underserved Communities

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The Power of Partnership in Research: Improving Healthcare Outcomes in Underserved Communities

  1. 1. How Does PCORI Choose What to Fund? Chad Boult, MD, MPH, MBA Director, Improving Healthcare Systems Program August 1, 2013
  2. 2. What Is PCORI Looking For? 2 PCORI supports high-quality research that produces trusted information that will improve health care and outcomes that patients and their families care about
  3. 3. Which Outcomes Do Patients Care About? 3 Examples:  Health  Relief from symptoms  Health-related quality of life  Function (ability to do what they want to do)  Safety from medical harm  Survival
  4. 4. How Does PCORI Select the Most Promising Research Proposals to Support? 4
  5. 5. Two Parallel Solicitation Processes Stakeholder-initiated (“targeted”) funding announcements  Specific questions suggested by patients, clinicians, and other stakeholders  PCORI solicits applications to answer to these questions Investigator-initiated (“broad”) funding announcements  Broad topic areas announced every four months  PCORI solicits applications to answer questions posed by investigators 5
  6. 6. Stakeholder-initiated (“Targeted”) Funding Announcements How we get from stakeholders’ questions to funded research projects 6
  7. 7. Cast a Wide Net 7 Topics submitted through PCORI’s web site www.pcori.org/questions Topics posed at PCORI-sponsored workshops Topics identified by IOM, NIH, AHRQ, and other organizations and associations Topics submitted by PCORI staff members
  8. 8. Screen the Catch 8 To remove certain questions  About cost-effectiveness  About the causes of disease  That do not address patient-centered outcomes  That do not compare approaches to improving patient-centered outcomes  That have already been answered, or are in the process of being answered
  9. 9. Select the Best 10–20 Questions 9 Criteria 1. The question addresses a problem that puts a large burden on society, or on a subset of it 2. The question focuses on a patient-centered topic and outcome 3. Answers to the question are likely to improve healthcare practices and patient-centered outcomes 4. Answers to the question could be obtained within a few years
  10. 10. Advisory Panels Prioritize the Top 10–20 Questions 10 Advisory panels (21 people) include patients, caregivers, stakeholders, and researchers. Meetings are webcast to the public and archived. Before meeting, panelists receive a “topic brief” to provide background information on each of the questions to be prioritized Panelists meet in person, using discussion and software, to prioritize the top questions for possible funding announcements in the future
  11. 11. Criteria for Prioritizing Questions 11 1. The burden that the problem puts on society 2. The patient-centeredness of the question 3. The need for new information about benefits and harms to choose between alternative interventions 4. The likelihood that answers to the question would be implemented in practice 5. The durability of the answer(s) to the question
  12. 12. Targeted Funding Announcements 12 Following approval by PCORI’s board, PCORI staff members write and release solicitations (PFAs) for applications for contracts to conduct research to answer the highest priority questions Merit review of submitted applications  By scientists, patients, caregivers, and stakeholders
  13. 13. First Two Rounds 13 1. The first “targeted” funding announcements were released earlier this summer  Treatment Options for African Americans and Hispanics/Latinos with Uncontrolled Asthma  Preventing Injuries from Falls in the Elderly 2. The second set will be released later this year and next year
  14. 14. Investigator-Generated (“Broad”) Funding Announcements 14
  15. 15. PCORI’s Research Portfolio PCORI has approved 76 awards totaling $123 million through the first two cycles of our broad PCORI funding announcements (PFAs) Cycle III awards will be made in September 2013 PCORI will award more than $355 million in 2013 and upwards of $500 million in 2014 The first PFA cycle of our second year of funding opened May 15, and applications are due August 15 15
  16. 16. 16 Get Involved Patients, stakeholders, and researchers can participate in this selection process at http://www.pcori.org/get-involved Submit questions for possible future funding Apply to be a member of a merit review panel
  17. 17. Engagement Awards and Pipeline to Proposal Awards
  18. 18. Concept Origin Proposed by participants at October 2012 Transforming Patient-Centered Research patient engagement workshop Workshop participants identified that few resources have been directed to non – research entities for community development, capacity building, or for infrastructure development for engagement in research as partners. 18
  19. 19. Engagement's Strategic Pillars = Three Arms of Engagement Awards Develop PCOR Community: Knowledge Awards will help PCORI to develop the PCOR community by enabling us to partner with organizations and individuals equipped to cull the best examples of PCOR and CER from the field, and to expand understanding of and connection to PCOR. Examples of potential activities to be funded through Knowledge Awards, listed in the green box in the diagram below, include things like landscape reviews, background papers, and mechanisms for sharing key CER and PCOR information. Engage the PCOR Community in Research: Training and Development awards will help PCORI accomplish our second pillar by funding the cultivation of a larger, more educated and research-ready PCOR community. Examples of specific activities, listed in the purple box in the diagram below, will include but are not limited to efforts to link interested patients, stakeholders and researchers together to build research partnerships and the Pipeline to Proposals Awards, formerly known as Micro-Contracts. Promote Dissemination and Implementation of Research: Implementation Awards will allow PCORI to evaluate our engagement work and share our findings. These awards will cover two sets of activities, examples of which are listed in the orange box in the diagram below; working with and through key partners to review the effectiveness of our engagement strategy, and widely disseminating information about and encouraging implementation of the best patient engagement, PCOR, and CER practices. 19
  20. 20. Engagement Awards 20
  21. 21. First Engagement Awards Opportunity: Pipeline to Proposal Awards 21
  22. 22. Tier I Pipeline Awards (Up to $15,000 for 9 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” 22
  23. 23. Tier II Pipeline Awards (Up to $25,000 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. 23
  24. 24. Tier III Pipeline Awards (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 24
  25. 25. Three Tiers 25
  26. 26. Tier I Awards: Role of Intermediate Funders 26
  27. 27. 27 Questions?
  28. 28. The Power of Partnership in Research: Improving Healthcare Outcomes in Underserved Communities August 1, 2013 1
  29. 29. About Us An independent non-profit research organization authorized by Congress as part of the 2010 Patient Protection and Affordable Care Act (PPACA). Committed to continuously seeking input from patients and a broad range of stakeholders to guide our work. 2
  30. 30. Our Mission and Vision Mission The 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. Vision Patients and the public have the information they need to make decisions that reflect their desired health outcomes. 3
  31. 31. 4 Our Board of Governors Represents the Entire Healthcare Community PCORI Board of Governors, March 2012 in Baltimore, MD
  32. 32. Source: Patient Protection and Affordable Care Act. Subtitle D, PUBLIC LAW 111–148—MAR. 23, 2010. Our Purpose – From the PPACA “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.
  33. 33. Our Core Duties Establish national research priorities Establish and carry out a research agenda Develop and update methodological standards Disseminate research findings 6
  34. 34. 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 proposed 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. 7
  35. 35. National Priorities for Research and Research Agenda 1. 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 2. 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 3. Communication and Dissemination Research •Understanding and enhancing shared decision-making •Alternative strategies for dissemination of evidence •Exploring opportunities to improve patient health literacy 4. Addressing Disparities •Understanding differences in effectiveness across groups •Understanding differences in preferences across groups •Reducing disparities through use of findings from PCOR 5. 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 8
  36. 36. Our Major Funding Opportunities PCORI Funding Announcements (PFAs) • Assessment of Prevention, Diagnosis, and Treatment Options • Improving Healthcare • Communication and Dissemination • Addressing Disparities • Accelerating PCOR Research and Methodological Research Improving Infrastructure for Conducting PCOR • Clinical Data Research Networks (CDRN) • Patient-Powered Research Networks (PPRN) Targeted Funding Announcements • Treatment options for African Americans and Hispanics/Latinos with uncontrolled asthma (Letter of Intent due: 8/1/13) • Preventing injuries from falls in the elderly (in partnership with the National Institute on Aging) • Treatment options for uterine fibroids 9
  37. 37. Our Review Criteria National Research Priority Areas 1-4 • Impact of the condition on health of individuals and populations • Potential for improving care and outcomes • Technical merit • Patient-centeredness • Patient and stakeholder engagement National Research Priority Area 5 • Impact on field of PCOR • Potential for the study to improve PCOR methods • Technical merit • Patient-centeredness • Patient and stakeholder engagement 10
  38. 38. Our Primary Research Portfolio We will award more than $355 million in 2013 and upwards of $500 million in 2014 The first cycle of our second year of funding opened May 15 and applications are due August 15 Cycle III awards will be announced September 2013 11 Cycle I and Cycle II awarded 76 primary research projects 23 states and DC $123 million
  39. 39. Research Infrastructure Two funding announcements for up to $68 million to support development of a National Patient- Centered Clinical Research Network.  Clinical Data Research Networks (CDRN)  Patient-Powered Research Networks (PPRN) Key Dates:  April 23, Funding Announcement Release Date  June 14, Letters of Intent (LOI) Due  September 23, Application Deadline  December, Awards Announced 12
  40. 40. Building Research Infrastructure Characteristics: A “network of networks” Two types of component networks: systems-generated and patient driven networks Active involvement of health care systems, of clinicians and of patients A commitment to establishing inter- operability and data sharing across networks and ready collaboration with the larger research community Capabilities: Rich clinical data from electronic health records and other data sources stored in standardized, interoperable formats Capacity to conduct both observational studies and randomized trials embedded in clinical settings Rigorous practices for data security and confidentiality Appropriate IRB and human subjects oversight Utility for comparative clinical effectiveness, safety studies, surveillance, etiologic research, and potentially for pre-approval trials 13
  41. 41. 14 National Patient-Centered Clinical Research Network: Our Vision Steering Committee Scientific Advisory Board Special Expert Group Coordinating Center Staff
  42. 42. Our First Targeted Research Topics Identified several high-priority, stakeholder-vetted topics for targeted funding announcements Jumpstarts our long-term topic generation and research prioritization effort Leverages stakeholder input from before we were created Allows us to build on our engagement work 15 Treatment Options for Uterine Fibroids Preventing Injuries From Falls in the Elderly Treatment Options for African Americans and Hispanics/Latinos with Uncontrolled Asthma
  43. 43. Treatment Options for African Americans and Hispanics/Latinos with Uncontrolled Asthma PCORI seeks to fund comparative effectiveness research that focuses on reducing adverse outcomes due to poorly controlled asthma in African-American and Hispanic/Latino individuals, populations, and subgroups. We seek CER that tests interventions to improve clinician and patient adherence to guidelines produced by the National Asthma Education and Prevention Program of the National Heart, Lung, and Blood Institute.  Research Priority Area: Addressing Disparities  LOI Deadline: Aug. 1, 2013  Funds Available: Up to $17 million  Max. Project Period: 3 years  More Information: http://www.pcori.org/funding-opportunities/funding- announcements/ 16
  44. 44. Building Our Research Portfolio: 2013 Funding Commitments Funding Stream LOI Deadline Application Deadline Anticipated Award Date Cycle II PFAs Oct. 15, 2012 Dec. 17, 2012 May 6, 2013 PFA on Improving Methods for PCOR Jan. 15, 2013 Mar. 15, 2013 Jul. 2013 Cycle III PFAs Feb. 15, 2013 Apr. 15, 2013 Sept. 2013 August 2013 PFAs Jun. 15, 2013 Aug. 15, 2013 Dec. 2013 Improving Infrastructure Jun. 19, 2013 Sept. 27, 2013 Dec. 2013 Treatment Options for African- Americans and Hispanics/Latinos with Uncontrolled Asthma Aug. 1, 2013 Sept. 18, 2013 Dec. 2013 17 We will commit more than $355 million in research and infrastructure development funding in 2013
  45. 45. Engagement as a Path to Rigorous Research 18 Advise Us On What PCORI Should Study • What outcomes should be studied? • What questions are most important? Review Proposals & Partner in Research • Review research proposals • Participate in conducting research Help Us Share Research Findings • How do we best communicate important research findings? Tell Us How We’re Doing • How can we improve on what we are doing and how we are doing it?
  46. 46. Two Paths to Research Funding Investigator-Initiated 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/Other Stakeholder Initiated 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
  47. 47. 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
  48. 48. Our First Advisory Panels 21 Include clinicians, researchers, patients, and other experts with appropriate experience and knowledge to help us achieve our goals Assure meaningful patient engagement in:  Research activities  Identifying research priorities and topics  Conducting randomized clinical trials  Performing special research studies Addressing Disparities Assessment of Prevention, Diagnosis, and Treatment Options Improving Healthcare Systems Patient Engagement
  49. 49. 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: pcori.org/get- involved/reviewers 22
  50. 50. What roles should patients and stakeholders play in research teams? 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 23
  51. 51. Facilitating Patient Involvement in Research Matching Initiative Engagement Awards 24
  52. 52. Engagement Awards Program to Advance Patient-Centered Outcomes Research 25 Targeted funding to dozens of groups of patients and stakeholders to support the expansion of PCOR and implementation of its results Supporting projects to enhance knowledge of PCOR and its benefits Training to foster partnerships between patients, other healthcare stakeholders, and scientists that can lead to research projects Supporting efforts to implement results of the research in clinical practice • $1.2 million • Training program to build research capacity • Fund a series of “Pipeline to Proposal” Awards Engagement Awards
  53. 53. The PCORI Challenge Patient/researcher “matching” mechanism or system Connect potential partners interested in seeking funding for PCOR Concept or Prototype Managed by Health 2.0
  54. 54. The Winners! Concept ($10,000) “Act Together and Connect for Patient-Centered Outcomes Research (ACTONNECT)” Research team lead: Marshfield Clinic Research Foundation, Marshfield, Wis. Prototype ($40,000) “WellSpringboard: A Prototype for Patient-Researcher Matching” Research team: University of Michigan, Ann Arbor, MI.
  55. 55. Communicating Research Results 28 DISSEMINATION IMPLEMENTATION+ Engage major patient organizations Establish partnerships with specialty organizations; Build working relationships with health plans; Develop partnerships with health systems; Connect with the National Patient-Centered Clinical Research Network; Publish findings in key journals; and Explore use of web services, social media, apps, etc. PCORI's Blueprint for a Dissemination and Implementation Action Plan
  56. 56. The Case for Addressing the Implementation Gap Research + Practice Optimal Healthcare Delivery PCORI’s Blueprint for Dissemination and Implementation Targets the Gap Current Knowledge and Practice New Investments in Knowledge Implementation Gap to Improve Practice 29 PCORI's Blueprint for a Dissemination and Implementation Action Plan
  57. 57. Developing the PCORI Dissemination and Implementation Action Plan PCORI's Blueprint for a Dissemination and Implementation Action Plan 30 Process for Developing PCORI’s Blueprint for Dissemination and Implementation Action Plan Incorporate learning from workshop and develop PCORI Action Plan for Dissemination and Implementation Host D & I Roundtable Convene experts at D & I Roundtable to receive input which will inform RFP Conduct Phone Calls Collect preliminary information from roundtable participants Release RFP or RFPs Award RFP or RFPsHost D & I WorkshopFINAL: PCORI D & I Action Plan JULY 2013 Using input from the roundtable, develop and release an RFP or a series of RFPs Award RFP or RFPs to finalists for development of background materials Convene D & I Workshop to hear results of project(s) RFP AUGUST 2013 OCTOBER 2013FEBRUARY 2014FEBRUARY 2014
  58. 58. Join us at www.pcori.org info@pcori.org
  59. 59. PCORI Engagement Panel August 1, 2013 ADDRESSING MENTAL HEALTH NEEDS OF RURAL AFRICAN AMERICANS FAY W. BOOZMAN COLLEGE OF PUBLIC HEALTH
  60. 60. Academic & Community Team Greer Sullivan, MD, MSPH (PI) Mary Olson, D.Min (Community PI) Naomi Cottoms, MA Geoff Curran, PhD Ann Cheney, PhD Tiffany Haynes, PhD Keneshia Bryant, PhD, FNP Christina Reaves, MPH Elise Allee Faye Smith Community Advisory Board Rev. George Barnes Linda Cole Melva Trask Gloria Scott Edlun Marshall Pamela Barnes Earnest Virgil Ward
  61. 61. The setting: Arkansas Delta • Primarily rural with agriculture based economy • Characterized by: • Poor economic conditions • Higher prevalence of chronic health conditions • Increased risk of early mortality • Poor access to quality health services • Highest percentage of cities with predominately African-American populations
  62. 62. Mental Health in the Delta • Poorer self-reported mental health • Increased levels of frequent mental distress (BFRSS) • Poorer mental health outcomes • Increased burden of disability • Increased mortality • Poorer management of chronic physical health • Underuse of mental health services
  63. 63. Two Different Ways to Obtain Community Perspectives • Focus Groups • Researcher identifies stakeholders • Researcher creates interview guide • More traditional research method • Deliberative Democracy • Allows community to self-identify as stakeholders or citizens • Community creates the frame • Method utilized by Tri-County DHSR Methods Tri County’s Methods Hypotheses Differences in: • Content of findings • Degree of empowerment
  64. 64. Mental Health vs. Emotional Wellness No one is going to talk to you about mental health. When people hear mental health they think of crazy. Ain’t nobody going to talk to you about being crazy. I ain’t crazy, I don’t know how to help you help crazy people If you want my expertise, you have to ask me about things I know about. CAB member
  65. 65. Where are we now? • Completed 6 Focus Groups (n=50) • Faith community • College students and administrators • Patients • Providers • Completed 6 Community Forums (n=86) • Lay community “citizens” • Service organization leaders • Political leaders
  66. 66. Where are we now? Preliminary analysis • Stigma and low mental health literacy major barriers to care • Importance of “reaching people where they are” • Community based services vs. clinic based • Importance of community support in prevention, treatment, and recovery • Provide education and support • Address contextual causes that affect emotional wellness
  67. 67. Where are we going? Potential Outcomes/Interventions • Mental Health Awareness Campaign • Peer Based Mental Health Services • Stigma Reduction Campaigns Dissemination of results • Community Forums • Scientific Peer Reviewed Journals • Scientific Conferences
  68. 68. PCORI Engagement Panel August 1, 2013 ADDRESSING MENTAL HEALTH NEEDS OF RURAL AFRICAN AMERICANS FAY W. BOOZMAN COLLEGE OF PUBLIC HEALTH
  69. 69. Getting to a Patient-Centered Comparative Effectiveness Research Question Susan Hildebrandt, MA Director, Stakeholder Engagement Memphis, Tennessee August 1, 2013 42
  70. 70. 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?” 43
  71. 71. How PCORI Defines Comparative Effectiveness Research (CER) Compares two or more health and healthcare choices faced by patients, caregivers, clinicians, and healthcare organizations. Seeks to answer a medical research question for which there is not sufficient evidence or there is contradicting information. Is likely to provide evidence that can reduce uncertainty, support decision making, change practice, and improve patients’ health outcomes. Studies a issue or condition that is highly prevalent or places a heavy burden on patients, their families and the healthcare system. 44
  72. 72. The Simplest Explanation Treatment A Treatment B 45
  73. 73. The Simplest Explanation - - 46 TreatmentA Preferences Characteristics Risks Side Effects TreatmentB Preferences Characteristics Risks Side Effects
  74. 74. Getting to the Comparative Question 47 Am I taking the right blood pressure medication? What are the side effects and benefits of different blood pressure medications? My elderly mother has dementia. Should I place her in a nursing home? What are comparative benefits and risks of nursing home, assisted living and home-based care for elderly patients with dementia? Health Question CER Question
  75. 75. Questions Outside our Scope of Work Cost Effectiveness: PCORI will consider the measurement of factors that may differentially affect patients’ adherence to the alternatives such as out-of-pocket costs, but cannot fund studies related to cost effectiveness, costs of treatments or interventions. Medical Billing: PCORI cannot fund studies about an individual’s insurance coverage or about coverage decisions from third party payers. Disease-processes and causes: PCORI cannot funding studies that pertain to risk factors, origin and mechanisms of diseases. 48
  76. 76. We Are Pleased to Present… Reducing Disparities with Literacy-Adapted Psychosocial Treatments for Chronic Pain: A Comparative Trial  PFA Cycle I: Addressing Disparities  Beverly Thorn, PhD • Principal Investigator • University of Alabama – Tuscaloosa  Toya Burton, DC, MPH • Community Partner • Whatley Health Services 49
  77. 77. Patient-Centered Research: What Does It Look Like? Beverly E. Thorn, Ph.D., ABPP bthorn@ua.edu Toya T. Burton, D.C., MPH Tburton@WhatleyHealth.org Aug. 1, 2013 PCORI Regional Workshop The Power of Partnership in Research: Improving Healthcare Outcomes in Underserved Communities Memphis, TN
  78. 78. More specifically, how did we get to where we are?
  79. 79. Examined PCORI Patient-centered Principles • Help patients and providers make more informed health care decisions. • Facilitate patient, consumer, and caregiver voices to be heard. • Include opportunities for co-learning and reciprocal transfer of expertise among researchers, patients, and caregivers. • Collaborate: patients, caregivers, and researchers partner to develop the research question
  80. 80. Clinical Relevance +Translational and “Real-World” Application of Product • Thorn, B. E. (2004). Cognitive Therapy for Chronic Pain: A Step- by-Step Guide. New York; Guilford Publications.
  81. 81. Cognitive-Behavioral Chronic Pain Trial Among Rural Minorities and non- Minorities Thorn et al., (2011). Randomized trial of group cognitive-behavioral therapy compared to a pain education control for low literacy rural people with chronic pain. Pain, 152, 2710-2720. • This research was supported by the National Institute on Nursing Research and NIMH Work in the Field (not Just in Academic Research Centers)
  82. 82. Solicited Patient Input • Key informant interviews – targeted individual patients following initial treatment phase (followed by refinement of questions and materials) • Focus groups of individuals with chronic pain (but not given the group treatment) after adapting materials and treatment approach • Qualitative interviews of patients following completions of adapted treatment approach (followed by more refinement prior to PCORI prop.)
  83. 83. Hearing the Patient Voice Translational Behavioral Medicine 2011;1:216– 223.
  84. 84. Our Patient-Centered Research Questions If I have chronic pain…. 1) “What are my options for treating my pain, and what are the benefits and harms of those options?” 2) “What can I do to improve my pain, interference due to pain, and my feelings of depression?”
  85. 85. How Did We Translate Them Into These Testable Research Questions? 1. In patients with chronic pain receiving care at a FQHC does participation in a health literacy– adapted psychosocial treatment group improve their self-reported pain intensity and interference in physical functioning when compared with a group receiving standard medical care? 2. In these patients, does participation in a Cognitive Behavioral pain management group improve depressive symptoms better than a Pain Education group?
  86. 86. To Determine Our Testable Research Questions: • Met individually with willing practitioners • Developed a small (pre-proposal) advisory board made up of former group members (patients) and practitioners • Listened for possible stumbling blocks: – feasibility – will they attend? – cultural sensitivity – can we ask about depression? – Ethics – is it ethical to have a no-treatment control group?
  87. 87. Established Relationships with Community Collaborators
  88. 88. The “Practitioner” as Research Partner Two-year clinical relationship with researcher helped with: • Trust issues around patient care • Confidence in researchers’ patient-centered questions • Increased our comfort with offering feedback • Increased willingness to introduce researchers to other key health care providers.
  89. 89. Practitioners Concerns • Help patients rely less on pain medications & focus more on chronic disease self- management • Certain clinics with the greater needs based on greatest substance dependency – Poses research design problem – Compromised by including another site with mixed population and few drug issues
  90. 90. Practitioners Concerns • What will you do for the control group (medical treatment as usual)
  91. 91. Practitioner Concerns • What will you do for our Spanish-speaking patients?
  92. 92. What does Engaging in this kind of research Mean to WHS as Stakeholder? • Largest collaboration so far • Prompted desire to get more expertise via training • Hopeful about changing the clinic culture • Hoping to reduce provider burden, especially regarding need to prescribing medications
  93. 93. In Conclusion • Patient-centeredness • Applies to real world • (hopeful) Reduced practitioner burden • (planned) Sustainability

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