PCORI chooses research topics through both investigator-initiated and stakeholder-initiated processes. For stakeholder-initiated topics, PCORI gathers questions from patients, caregivers and other stakeholders and prioritizes them based on criteria like disease burden and likelihood of improving outcomes. They then issue targeted funding announcements. For investigator-initiated research, PCORI issues broad funding announcements and researchers partner with stakeholders to develop proposals. All applications undergo peer review based on how well they address national research priorities and engage stakeholders. PCORI's goal is to fund a diverse portfolio of comparative effectiveness research that answers important questions for patients and healthcare providers.

1. How Does PCORI Choose
What to Fund?
Chad Boult, MD, MPH, MBA
Director, Improving Healthcare Systems Program
August 1, 2013

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. 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. How Does PCORI Select the Most
Promising Research Proposals to Support?
4

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. Stakeholder-initiated (“Targeted”) Funding
Announcements
How we get from stakeholders’
questions to funded research
projects
6

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. 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. 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. 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. 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. 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. 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. Investigator-Generated (“Broad”) Funding
Announcements
14

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
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. Engagement Awards and
Pipeline to Proposal Awards

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. 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. Engagement Awards
20

21. First Engagement Awards Opportunity:
Pipeline to Proposal Awards
21

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. 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. 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. Three Tiers
25

26. Tier I Awards:
Role of Intermediate Funders
26

27. 27
Questions?

28. The Power of Partnership in
Research: Improving
Healthcare Outcomes in
Underserved Communities
August 1, 2013
1

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. 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. 4
Our Board of Governors Represents the
Entire Healthcare Community
PCORI Board of Governors, March 2012 in Baltimore, MD

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. Our Core Duties
Establish national research priorities
Establish and carry out a research agenda
Develop and update methodological
standards
Disseminate research findings
6

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. 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. 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. 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. 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. 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. 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. 14
National Patient-Centered Clinical
Research Network: Our Vision
Steering
Committee
Scientific
Advisory
Board
Special
Expert
Group
Coordinating Center Staff

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. 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. 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. 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. 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. 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. 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. 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. 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. Facilitating Patient Involvement in
Research
Matching Initiative Engagement Awards
24

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. 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. 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. 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. 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. 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. Join us at www.pcori.org
info@pcori.org

59. PCORI Engagement Panel
August 1, 2013
ADDRESSING MENTAL
HEALTH NEEDS OF RURAL
AFRICAN AMERICANS
FAY W. BOOZMAN
COLLEGE OF
PUBLIC HEALTH

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. 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. 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. 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. 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. 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. 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. 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. PCORI Engagement Panel
August 1, 2013
ADDRESSING MENTAL
HEALTH NEEDS OF RURAL
AFRICAN AMERICANS
FAY W. BOOZMAN
COLLEGE OF
PUBLIC HEALTH

69. Getting to a Patient-Centered
Comparative Effectiveness
Research Question
Susan Hildebrandt, MA
Director, Stakeholder Engagement
Memphis, Tennessee
August 1, 2013
42

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. 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. The Simplest Explanation
Treatment
A
Treatment
B
45

73. The Simplest Explanation
-
-
46
TreatmentA
Preferences
Characteristics
Risks
Side Effects
TreatmentB
Preferences
Characteristics
Risks
Side Effects

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. 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. 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. 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. More specifically, how did we get to
where we are?

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. 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. 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. 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. Hearing the Patient Voice
Translational Behavioral
Medicine 2011;1:216–
223.

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. 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. 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. Established Relationships with
Community Collaborators

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. 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. Practitioners Concerns
• What will you do for the control group
(medical treatment as usual)

91. Practitioner Concerns
• What will you do for our Spanish-speaking
patients?

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. In Conclusion
• Patient-centeredness
• Applies to real world
• (hopeful) Reduced
practitioner burden
• (planned) Sustainability