How did I find PCORI?
Why Did I Apply To Be A Stakeholder Reviewer?
What Did I Do In Training?
How Did The Stakeholder Rev...
HOW I FOUND PCORI
I FOUND PCORI IN MY TACOS.
TACOS (TABLE OF CONTENTS SERVICE)*
(served up by the medical library)
Choose up to 10 Medical Journals.
Get Tables of Cont...
IN ONE OF THE PCORI ARTICLES
JAMA, 4/18/12 ---VOL. 307, NO. 15; PP. 1583-4.
DRS. SELBY AND BEAL WROTE
“The underlying impe...
WHY I APPLIED TO BE A
STAKEHOLDER REVIEWER
If PCORI wanted people to help direct research
toward what mattered to patients, I wanted to
help.
So, I applied, was inte...
STAKEHOLDER TRAINING
AND
REVIEW PROCESS
10/15/12 TRAINING SESSION #1
Overview of PCORI’s Mission, Background and
Priorities.
Description of Merit Review Roles, Pr...
PCORI ONLINE
Each reviewer was assigned to one of 4 groups.
I had 6 applications to review, grade, and
critique.
During th...
PCORI ONLINE (CONTINUED)
Then we all reviewed all the applications
assigned to our group before we arrived in
D.C. for Tra...
11/14/12 TRAINING SESSION #2
In Preparation For The Merit Review, we
participated in a Mock Review.
We learned, evaluated,...
11/15/12 PCORI MERIT REVIEW
2 Research Reviewers, 1 Stakeholder Reviewer, and
1 Patient Reviewer presented each applicatio...
SUMMARY OF MY EXPERIENCE
A Great Group of talented PCORIANS Led, Guided,
Trained, And Prepared Us For The Merit Review.
A ...
Hope you’ll join us on our journey!
Thank you.
JBMD03092113
How PCORI Picks Topics
to Study
Chad Boult, MD, MPH, MBA
Director, PCORI’s
“Improving Healthcare Systems” program
March 9,...
2
What is PCORI Looking For?
PCORI wants to support rigorous research:
that produces trusted information
that will improve...
3
What Do Patients Care About?
Good health
Relief from symptoms
Good health-related quality of life
Function (ability to d...
4
How Should PCORI Select Promising
Research Topics to Support?
5
1. Cast a Wide Net
Questions submitted through PCORI’s portal
http://www.pcori.org/get-involved/suggest-a-
patient-cente...
6
2. Initial Screening
To remove questions:
 About cost-effectiveness
 About the causes of disease
 That do not measure...
7
3. Select Questions That Best Meet
Four Criteria
The question addresses a problem that puts a
large burden on society, o...
8
4. Advisory Panels Prioritize
the Top Questions
Advisory panels (12-21 people) include patients,
stakeholders, and resea...
9
Criteria for Prioritizing Questions
1. The burden that the problem puts on society
2. The patient-centeredness of the qu...
10
Targeted Funding Announcements
Following the BoG’s approval, PCORI staff
members write and release solicitations for
ap...
11
First Two Rounds
1. The first set of such “targeted funding
announcements” (3-5 questions) will be
released this May.
2...
12
Getting Involved
Patients, stakeholders and researchers can participate
in this selection process.
Submit questions to:...
Patient/Advocate/Activist
Regina Greer-Smith MPH FACHE
Coordinator – Chicago/Partners Patient Engagement Cluster - CPPEC
M...
Why Am I Here?
Because of a series of family medical
events.*
A former health system administrator,
healthcare director an...
Regina Greer-Smith
Patient/Advocate/Activist
Active with PCORI since July 2012
Data Workshop in Palo Alto – July 2012
Memb...
The Chicago/Partners Patient Engagement Cluster (CPPEC) is a team of
community advocates with diverse backgrounds in the h...
Collaborate with the folks next to you
Get to know them; what’s going on, what do you see, what’s needed?
What are you loo...
Get Involved:
Join Us On Our Journey
Susan Hildebrandt, MA
Director, Stakeholder Engagement
March 9, 2013
1
Suggest a Research Question
www.pcori.org/questions
P2
We want to know what
health care question you
may be facing
Your in...
Become a Reviewer of Funding Applications
PCORI invites professional and
lay audiences to be reviewers of
research applica...
Targeted Funding Work Groups
Preventing Injuries from Falls in the Elderly
 March 12, 2013
Treatment Options for Back Pai...
Connect with PCORI
www.pcori.org
5
Introducing PCORI
Joe Selby, MD, MPH
Executive Director, PCORI
Wichita, Kansas
March 9, 2013
1
Introducing PCORI
PCORI is a new non-governmental, not-for-profit
research institute that funds research intended to
provi...
What PCORI Means by Engagement
December 12, 2012 3
PCORI’s Board of Governors
P4
PCORI Board of Governors, March 2012 in Baltimore, MD
Source: Affordable Care Act. Subtitle D—Patient-Centered Outcomes Research.
PUBLIC LAW 111–148—MAR. 23, 2010.
“The purpose...
Why PCORI?
BMJ – ClinicalEvidence 2013
PCORI Funding – Approximate
2012
2013
2014
2015
....
2019
$150,000,000*
$300,000,000
$500,000,000
$500,000,000
$500,000,00...
Some of PCORI’s Key Accomplishments
Defined Patient-Centered Outcomes Research (PCOR)
Established National Priorities and ...
What is Patient-Centered Outcomes Research?
Patient-Centered Outcomes Research (PCOR) helps people and their
caregivers co...
What Does PCORI Mean By Patient-
Centeredness?
Does the proposed research compare the
effects of treatment options that ma...
National Priorities for Research and
Research Agenda
Assessment of
Prevention, Diagnosis, and Treatment Options
Improving ...
Our Research Portfolio: 50 Pilot Projects
Advance the field of patient-centered outcomes research
Support the identificati...
What Did We Fund in Cycle I?
9 6 6 4
Assessment of
Prevention,
Diagnosis, and
Treatment Options
Improving
Health Systems
C...
Location of 50 Pilot Projects –
5 Projects with Rural Focus
Engaging Stakeholders to
Improve Depression
Management in a Tr...
One Central States project:
Extension Connection: Advancing Dementia Care for Rural and Hispanic Populations (IA)
(Communi...
Key Criteria for Funding
16
Patient-Centeredness – Is the proposed research
focused on comparisons and outcomes that matte...
Our First Topics for Targeted Research Funding
Jump-starts our long-term effort
to identify and prioritize specific
resear...
Long-term Approach to Targeted Research:
PCORI Advisory Panels
18
Will include clinicians, researchers,
patients, and othe...
Key Comparative Questions in Rural Health
 Access to primary care, including OB/GYN, and
pharmacy
• Role of non-physician...
We Want to Hear From You
Are we on the right track?
What are we missing?
What should PCOR look like in a rural area?
We wa...
Building A Team: Patient/Stakeholder –
Researcher Matching
Sue Sheridan, MIM, MBA
Director, Patient Engagement
March 10, 2...
Methodology Standards Associated with
Patient-Centeredness
PC-1 Engage people representing the population of
interest and ...
3
Video Clip: Ming Tai Seale
Review Criterion 7: Team and Environment
(Current)
 Are the investigators appropriately trained and experienced to carry ...
5
Video Clip: David Thorn
Challenge Background
PCORI is committed to meaningful patient,
caregiver and stakeholder engagement as a tool
for rigorous...
The Challenge
Develop a “matching” system that can connect
researchers and potential patient partners.
Solution could be:
...
The Challenge
Two first-place awards:
 Conceptual model -- $10,000
 Prototype of app -- $40,000
Winners’ work may be con...
Evaluation Criteria
Technical feasibility, usability and scalability of the
proposed conceptual model/prototype.
Differenc...
Timeline
Submission period began: December 14, 2012
Submission period ends: April 15, 2013
Winners notified: May 15, 2013
...
Video Clip: Dr. Vinod Bhutani/Kris Schulze
11
Engagement Awards:
From Partnerships to Proposals
Sue Sheridan, MIM, MBA
Concept origin
Proposed by participants at
October 2012 Transforming
Patient-Centered Research
patient engagement
workshop...
Purpose
14
Expedite building “community”
Strengthen reciprocal relationships between researchers and non-
research communi...
Design
15
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The Power of Partnership in Research: Improving Healthcare Outcomes in Rural Settings

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Slide presentations from the March 9-10, 2013 event in Wichita, Kansas on rural healthcare options.

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The Power of Partnership in Research: Improving Healthcare Outcomes in Rural Settings

  1. 1. How did I find PCORI? Why Did I Apply To Be A Stakeholder Reviewer? What Did I Do In Training? How Did The Stakeholder Review Process Go?
  2. 2. HOW I FOUND PCORI
  3. 3. I FOUND PCORI IN MY TACOS.
  4. 4. TACOS (TABLE OF CONTENTS SERVICE)* (served up by the medical library) Choose up to 10 Medical Journals. Get Tables of Contents - Delivered to the Door. Select 2 Articles from Each Journal’s TACO. Get Copies of those Articles - Delivered to the Door. STILL A GREAT WAY TO KEEP CURRENT! *Thanks, Dick Kammer, wherever you are.
  5. 5. IN ONE OF THE PCORI ARTICLES JAMA, 4/18/12 ---VOL. 307, NO. 15; PP. 1583-4. DRS. SELBY AND BEAL WROTE “The underlying imperative is to improve patients’ care experience, decision making, and health outcomes. Patients as well as the physicians and other health care professionals who care for and about them are invited and encouraged to join this effort.” I went to the PCORI website and read more…
  6. 6. WHY I APPLIED TO BE A STAKEHOLDER REVIEWER
  7. 7. If PCORI wanted people to help direct research toward what mattered to patients, I wanted to help. So, I applied, was interviewed, and was selected. Then, the work as a Stakeholder Reviewer began….
  8. 8. STAKEHOLDER TRAINING AND REVIEW PROCESS
  9. 9. 10/15/12 TRAINING SESSION #1 Overview of PCORI’s Mission, Background and Priorities. Description of Merit Review Roles, Process, and Criteria. Guide to PCORI Online and the Scoring Process. Walkthrough of a Sample Application. Discussion of the Integrity of the Review Process. Then, on to reviewing PCORI’s Applications…
  10. 10. PCORI ONLINE Each reviewer was assigned to one of 4 groups. I had 6 applications to review, grade, and critique. During that time, there was a Town Meeting/Webinar for questions, answers, comments, and discussion. There was a deadline for submitting the grading and critiques of the assigned applications.
  11. 11. PCORI ONLINE (CONTINUED) Then we all reviewed all the applications assigned to our group before we arrived in D.C. for Training Session #2 and the Merit Review.
  12. 12. 11/14/12 TRAINING SESSION #2 In Preparation For The Merit Review, we participated in a Mock Review. We learned, evaluated, and discussed in teams. Each Stakeholder Reviewer played a role in the Mock Review.
  13. 13. 11/15/12 PCORI MERIT REVIEW 2 Research Reviewers, 1 Stakeholder Reviewer, and 1 Patient Reviewer presented each application. Then there was discussion about each application. Then all Reviewers graded each application. On 12/18/12, PCORI announced the Funding Awards from the 11/15/12 PCORI Merit Review!
  14. 14. SUMMARY OF MY EXPERIENCE A Great Group of talented PCORIANS Led, Guided, Trained, And Prepared Us For The Merit Review. A Great Mix Of Scientists, Patients, And Stakeholders. All Reviewers Treated Each Other As Valuable Colleagues. The Chairs Moderated The Discussion So That Different Points Of View Could Be Heard. The Panel Was Run Smoothly, Efficiently, On Schedule.
  15. 15. Hope you’ll join us on our journey! Thank you. JBMD03092113
  16. 16. How PCORI Picks Topics to Study Chad Boult, MD, MPH, MBA Director, PCORI’s “Improving Healthcare Systems” program March 9, 2013
  17. 17. 2 What is PCORI Looking For? PCORI wants to support rigorous research: that produces trusted information that will improve health care and outcomes that patients and their families care about.
  18. 18. 3 What Do Patients Care About? Good health Relief from symptoms Good health-related quality of life Function (ability to do what they want to do) Safety from medical harm Survival
  19. 19. 4 How Should PCORI Select Promising Research Topics to Support?
  20. 20. 5 1. Cast a Wide Net Questions submitted through PCORI’s portal http://www.pcori.org/get-involved/suggest-a- patient-centered-research-question-survey Questions posed at PCORI-sponsored workshops. Questions identified by IOM, NIH, AHRQ, and other organizations and associations Questions submitted by PCORI staff members
  21. 21. 6 2. Initial Screening To remove questions:  About cost-effectiveness  About the causes of disease  That do not measure 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.
  22. 22. 7 3. Select Questions That Best Meet Four Criteria The question addresses a problem that puts a large burden on society, or on a subset of it. The question focuses on patient-centered outcomes (PCO). Answers to the question are likely to improve healthcare practices and PCO. Answers to the question could be obtained within a few years.
  23. 23. 8 4. Advisory Panels Prioritize the Top Questions Advisory panels (12-21 people) include patients, stakeholders, and researchers. Panelists receive a background “topic brief” on each of about 12 questions to be prioritized. Panelists meet in-person, using discussion and software, to prioritize the 12 questions for the PCORI Board of Governors (BoG). Panel meetings are webcast for all to hear.
  24. 24. 9 Criteria for Prioritizing Questions 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 answers to the questions.
  25. 25. 10 Targeted Funding Announcements Following the BoG’s approval, PCORI staff members write and release solicitations for applications for contracts to conduct research to answer the highest-priority questions. Merit review of submitted applications
  26. 26. 11 First Two Rounds 1. The first set of such “targeted funding announcements” (3-5 questions) will be released this May. 2. The second set (12-15 questions) will be released later this summer.
  27. 27. 12 Getting Involved Patients, stakeholders and researchers can participate in this selection process. Submit questions to:http://www.pcori.org/get- involved/suggest-a-patient-centered-research- question-survey. Apply to be a member of an Advisory Panel:http://www.pcori.org/advisory-panel- application-center. Apply to be a member of a merit review panel: http://www.pcori.org/get-involved/reviewers.
  28. 28. Patient/Advocate/Activist Regina Greer-Smith MPH FACHE Coordinator – Chicago/Partners Patient Engagement Cluster - CPPEC March 5, 2013
  29. 29. Why Am I Here? Because of a series of family medical events.* A former health system administrator, healthcare director and decision-support analyst, she is now a health coordinator for over 500 developmentally and intellectually disabled adult patients. I have been given the opportunity to share my story and experiences to engage and assist patients/ families/and stakeholders in decision-making for a better quality of life with their healthcare. 2 Regina Greer-Smith * At the request of the presenter, this information was amended on March 28, 2013 to protect her family’s privacy.
  30. 30. Regina Greer-Smith Patient/Advocate/Activist Active with PCORI since July 2012 Data Workshop in Palo Alto – July 2012 Member of PCORI Working Group for October Patient Workshop- Planning Participant in the Workshop – Oct 27-29, 2012 As a result of the October Workshop, a group of workshop participants (including me and Pastor Bruce) created: The Chicago/Partners Patient Engagement Cluster –CPPEC 3
  31. 31. The Chicago/Partners Patient Engagement Cluster (CPPEC) is a team of community advocates with diverse backgrounds in the health sciences and community advocacy who are converging to address issues of health disparities and health inequities in underserved, minority and communities with elevated risk. Our goal is to partner with PCORI to engage diverse and populations with elevated risk with researchers. Establish a community engaged working group that fosters engagement of diverse populations in clinical and translational research. 4 The Chicago/Partners Patient Engagement Cluster (CPPEC)
  32. 32. Collaborate with the folks next to you Get to know them; what’s going on, what do you see, what’s needed? What are you looking for from research? What Questions do you have? Where/who are the researchers? Do they know you? Get Together LET US HELP YOU CREATE YOUR PATIENT ENGAGEMENT CLUSTER Email: Regina @ healthcareresearch@sbcglobal.net 5 You can form your own patient/family/Stakeholder Cluster, starting now:
  33. 33. Get Involved: Join Us On Our Journey Susan Hildebrandt, MA Director, Stakeholder Engagement March 9, 2013 1
  34. 34. Suggest a Research Question www.pcori.org/questions P2 We want to know what health care question you may be facing Your input can help us refine our research agenda
  35. 35. Become a Reviewer of Funding Applications PCORI invites professional and lay audiences to be reviewers of research applications Help us support research that will be both scientifically rigorous and truly patient-centered Learn more and apply online: www.pcori.org/get-involved/reviewers/ 3
  36. 36. Targeted Funding Work Groups Preventing Injuries from Falls in the Elderly  March 12, 2013 Treatment Options for Back Pain  March 21, 2013 Obesity Treatment Options in Diverse Populations  April 16, 2013 P4
  37. 37. Connect with PCORI www.pcori.org 5
  38. 38. Introducing PCORI Joe Selby, MD, MPH Executive Director, PCORI Wichita, Kansas March 9, 2013 1
  39. 39. Introducing PCORI PCORI is a new non-governmental, not-for-profit research institute that funds research intended to provides patients and those who care for them the information they need to make better informed health care decisions. Our core duties are to:  Establish national research priorities  Establish and carry out a research agenda  Develop and update methodological standards  Disseminate research findings 2
  40. 40. What PCORI Means by Engagement December 12, 2012 3
  41. 41. PCORI’s Board of Governors P4 PCORI Board of Governors, March 2012 in Baltimore, MD
  42. 42. Source: Affordable Care Act. Subtitle D—Patient-Centered Outcomes Research. PUBLIC LAW 111–148—MAR. 23, 2010. “The purpose of the Institute is to assist patients, clinicians, purchasers, and policy- makers in making informed health decisions by advancing the quality and relevance of evidence concerning the manner in which diseases, disorders, and other health conditions can effectively and appropriately be prevented, diagnosed, treated, monitored, and managed through research and evidence synthesis that considers variations in patient subpopulations and the dissemination of research findings with respect to the relative health outcomes, clinical effectiveness, and appropriateness of medical treatments, services. Purpose Of PCORI What is PCORI – from The Affordable Care Act
  43. 43. Why PCORI? BMJ – ClinicalEvidence 2013
  44. 44. PCORI Funding – Approximate 2012 2013 2014 2015 .... 2019 $150,000,000* $300,000,000 $500,000,000 $500,000,000 $500,000,000 * 20% each year goes to AHRQ/HHS 7
  45. 45. Some of PCORI’s Key Accomplishments Defined Patient-Centered Outcomes Research (PCOR) Established National Priorities and First Research Agenda Awarded 50 Pilot Projects Approved Revised Methodology Standards Awarded 25 Primary Research Projects Built a Robust Patient and Stakeholder Engagement Program 4
  46. 46. What is Patient-Centered Outcomes Research? 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?” 9
  47. 47. What Does PCORI Mean By Patient- Centeredness? Does the proposed research compare the effects of treatment options that matter to patients; are these realistic choices faced by patients or other decision-makers? Does the research focus on outcomes of interest to patients and their caregivers, such as health, health-related quality of life, functioning, symptoms, safety from medical harm, survival and satisfaction with care?
  48. 48. National Priorities for Research and Research Agenda Assessment of Prevention, Diagnosis, and Treatment Options Improving Healthcare Systems Communication & Dissemination Research Addressing Disparities Accelerating PCOR and Methodological Research
  49. 49. Our Research Portfolio: 50 Pilot Projects Advance the field of patient-centered outcomes research Support the identification of methodologies Identify gaps where methodological research needs further development Approved April 25, 2012 50 projects 24 states $31 million 12
  50. 50. What Did We Fund in Cycle I? 9 6 6 4 Assessment of Prevention, Diagnosis, and Treatment Options Improving Health Systems Communications and Dissemination Research Addressing Disparities Average Award: $1,698,072 Average Award: $1,653,590 Average Award: $1,421,132 Average Award: $1,746,223 Total Awarded: $15,282,647 Total Awarded: $9,921,541 Total Awarded: $8,526,789 Total Awarded: $6,984,893 13
  51. 51. Location of 50 Pilot Projects – 5 Projects with Rural Focus Engaging Stakeholders to Improve Depression Management in a Tribal Health System (AK) Addressing Mental Health Needs of Rural African Americans (AR) Mobile Apps (MAPPS): Patient & Caregiver Attitudes, Behaviors, and Knowledge (CO) Integrating and Comparing Community-Based Participatory and Conjoint Analysis Approaches to Designing Behavioral Health Services (AZ) www.pcori.org 14 Boot Camp Translation for Patient- Centered Outcomes (CO)
  52. 52. One Central States project: Extension Connection: Advancing Dementia Care for Rural and Hispanic Populations (IA) (Communications and Dissemination Research program) 25 PFA Cycle I Awards 15 25 Total Awards Average Award $1,628,635 Grand Total Awarded $40,715,870
  53. 53. Key Criteria for Funding 16 Patient-Centeredness – Is the proposed research focused on comparisons and outcomes that matter to patients and their caregivers? Innovation & Potential for Improvement – Might the proposed research lead to changes in patient or clinician practices that lead in turn to meaningful improvement in patient health? Patient and Stakeholder Engagement – Have the researchers included in their team relevant patients and other key healthcare community members, representative of those who would use its information?
  54. 54. Our First Topics for Targeted Research Funding Jump-starts our long-term effort to identify and prioritize specific research topics to study Leverages stakeholder input Ad hoc workgroup meetings available via webinar  www.pcori.org/events Research Topics: Treatment Options for Severe Asthma in African-Americans and Hispanics/Latinos Treatment Options for Uterine Fibroids Preventing Injuries from Falls in the Elderly Treatment Options for Back Pain Obesity Treatment in Diverse Populations 17
  55. 55. Long-term Approach to Targeted Research: PCORI Advisory Panels 18 Will include clinicians, researchers, patients, and other experts with appropriate experience and knowledge to help us achieve our goals Will assure meaningful patient engagement in:  Research activities  Identifying research priorities and topics  Conducting randomized clinical trials  Performing special research studies Applications period closed March 4 Panels announced in late March Addressing Disparities Assessment of Prevention, Diagnosis, and Treatment Options Improving Healthcare Systems Patient Engagement
  56. 56. Key Comparative Questions in Rural Health  Access to primary care, including OB/GYN, and pharmacy • Role of non-physician providers • Retention of providers • Telemedicine, health information technology, and health information exchange  Rural economic conditions • Economic health of hospitals/facilities  Care coordination, particularly for chronic conditions • Aging, Alzheimer’s, heart failure, mental health, oral health, renal failure  Agrimedicine/injuries  Migrant health 19
  57. 57. We Want to Hear From You Are we on the right track? What are we missing? What should PCOR look like in a rural area? We want to learn from you this weekend Questions? 20
  58. 58. Building A Team: Patient/Stakeholder – Researcher Matching Sue Sheridan, MIM, MBA Director, Patient Engagement March 10, 2013
  59. 59. Methodology Standards Associated with Patient-Centeredness PC-1 Engage people representing the population of interest and other relevant stakeholders in ways that are appropriate and necessary in a given research context. Stakeholders can be engaged in the processes of:  Formulating research questions;  Defining essential characteristics of study participants, comparators, and outcomes;  Identifying and selecting outcomes that the population of interest notices and cares about (e.g., survival, function, symptoms, health-related quality of life) and that inform decision making relevant to the research topic;  Monitoring study conduct and progress; and  Designing/suggesting plans for dissemination and implementation activities. 2
  60. 60. 3 Video Clip: Ming Tai Seale
  61. 61. Review Criterion 7: Team and Environment (Current)  Are the investigators appropriately trained and experienced to carry out the planned studies?  Is the work proposed appropriate to the experience level of the principal investigator?  Does the study team have complementary and integrated expertise?  Is their leadership approach, governance, and organizational structure appropriate for the project?  Are relevant patients and other key stakeholders of the study information appropriately involved in the design and implementation of the study?  Do the experiments proposed take advantage of unique features of the scientific environment or employ useful collaborative arrangements?  Is there evidence of institutional or other support? The 8 Merit Review Criteria: 1. Impact of the Condition 2. Innovation/Potential for Improvement 3. Impact on Healthcare Performance 4. Patient-Centeredness 5. Rigorous Research Methods 6. Inclusiveness of Different Populations 7. Team and Environment 8. Efficient Use of Resources 4
  62. 62. 5 Video Clip: David Thorn
  63. 63. Challenge Background PCORI is committed to meaningful patient, caregiver and stakeholder engagement as a tool for rigorous research. PCORI funding announcements require patients be fully engaged throughout research process. Engagement is among the criteria PCORI uses to score applications. 6
  64. 64. The Challenge Develop a “matching” system that can connect researchers and potential patient partners. Solution could be:  A well-articulated conceptual model.  An adaptation of existing matching protocol.  A prototype or an entirely new web-based service or app.  Some combination of these approaches, or something else entirely. 7
  65. 65. The Challenge Two first-place awards:  Conceptual model -- $10,000  Prototype of app -- $40,000 Winners’ work may be considered for additional PCORI support, depending on outcome of the review process. Submission materials: slide deck (5 slides), overview doc (5 pgs), video demo (5 min), link to working app (optional) 8
  66. 66. Evaluation Criteria Technical feasibility, usability and scalability of the proposed conceptual model/prototype. Differences in ways patients, caregivers and researchers understand, describe and seek answers to problems or issues they face. Maximizing “patient-centeredness” & scientific rigor. Particular challenges of serving "hard-to-reach" audiences: ethnic & racial minorities, rural pops, the elderly, physically challenged and non-English speakers. 9
  67. 67. Timeline Submission period began: December 14, 2012 Submission period ends: April 15, 2013 Winners notified: May 15, 2013 Winners announced: at a major national health conference in the spring of 2013 10
  68. 68. Video Clip: Dr. Vinod Bhutani/Kris Schulze 11
  69. 69. Engagement Awards: From Partnerships to Proposals Sue Sheridan, MIM, MBA
  70. 70. Concept origin Proposed by participants at October 2012 Transforming Patient-Centered Research patient engagement workshop 13 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
  71. 71. Purpose 14 Expedite building “community” Strengthen reciprocal relationships between researchers and non- research communities Support capacity building, co- learning, creating research questions and the development of a sustainable infrastructure to facilitate “research done differently” Accelerate proposal submission (or re-submission) to PCORI or other PCOR related research institutes Fast track implementation
  72. 72. Design 15
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