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.
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…
10/15/12 TRAINING SESSION #1
Overview of PCORI’s Mission, Background and
Description of Merit Review Roles, Process, and
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…
Each reviewer was assigned to one of 4 groups.
I had 6 applications to review, grade, and
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.
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
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
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!
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.
Hope you’ll join us on our journey!
How PCORI Picks Topics
Chad Boult, MD, MPH, MBA
“Improving Healthcare Systems” program
March 9, 2013
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.
What Do Patients Care About?
Relief from symptoms
Good health-related quality of life
Function (ability to do what they want to do)
Safety from medical harm
How Should PCORI Select Promising
Research Topics to Support?
1. Cast a Wide Net
Questions submitted through PCORI’s portal
Questions posed at PCORI-sponsored
Questions identified by IOM, NIH, AHRQ, and
other organizations and associations
Questions submitted by PCORI staff members
2. Initial Screening
To remove questions:
About the causes of disease
That do not measure patient-centered outcomes
That do not compare approaches to improving
That have already been answered, or are in the
process of being answered.
3. Select Questions That Best Meet
The question addresses a problem that puts a
large burden on society, or on a subset of it.
The question focuses on patient-centered
Answers to the question are likely to improve
healthcare practices and PCO.
Answers to the question could be obtained
within a few years.
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.
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
4. The likelihood that answers to the question
would be implemented in practice
5. The durability of the answers to the questions.
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
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.
Patients, stakeholders and researchers can participate
in this selection process.
Submit questions to:http://www.pcori.org/get-
Apply to be a member of an Advisory
Apply to be a member of a merit review panel:
Regina Greer-Smith MPH FACHE
Coordinator – Chicago/Partners Patient Engagement Cluster - CPPEC
March 5, 2013
Why Am I Here?
Because of a series of family medical
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.
* At the request of the presenter, this information was
amended on March 28, 2013 to protect her family’s privacy.
Active with PCORI since July 2012
Data Workshop in Palo Alto – July 2012
Member of PCORI Working Group for October Patient Workshop-
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
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
The Chicago/Partners Patient Engagement
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?
LET US HELP YOU CREATE YOUR PATIENT ENGAGEMENT CLUSTER
Email: Regina @ firstname.lastname@example.org
You can form your own patient/family/Stakeholder
Cluster, starting now:
Join Us On Our Journey
Susan Hildebrandt, MA
Director, Stakeholder Engagement
March 9, 2013
Suggest a Research Question
We want to know what
health care question you
may be facing
Your input can help
us refine our research
Become a Reviewer of Funding Applications
PCORI invites professional and
lay audiences to be reviewers of
Help us support research that
will be both scientifically rigorous
and truly patient-centered
Learn more and apply online:
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
Joe Selby, MD, MPH
Executive Director, PCORI
March 9, 2013
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
What PCORI Means by Engagement
December 12, 2012 3
PCORI’s Board of Governors
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 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,
What is PCORI – from The Affordable Care Act
PCORI Funding – Approximate
* 20% each year goes to AHRQ/HHS 7
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
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
what should I
happen to me?”
“What are my
options and what
are the potential
harms of those
“What can I do to
clinicians and the
work in help me
make the best
my health and
What Does PCORI Mean By Patient-
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?
National Priorities for Research and
Prevention, Diagnosis, and Treatment Options
Improving Healthcare Systems
Communication & Dissemination Research
Accelerating PCOR and Methodological Research
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
April 25, 2012 50 projects 24 states $31 million
What Did We Fund in Cycle I?
9 6 6 4
Location of 50 Pilot Projects –
5 Projects with Rural Focus
Engaging Stakeholders to
Management in a Tribal
Health System (AK)
Addressing Mental Health
Needs of Rural African
Mobile Apps (MAPPS):
Patient & Caregiver
Attitudes, Behaviors, and
Integrating and Comparing
Participatory and Conjoint
Analysis Approaches to
Health Services (AZ)
Boot Camp Translation for Patient-
Centered Outcomes (CO)
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
Key Criteria for Funding
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?
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
Treatment Options for Severe Asthma in
Treatment Options for Uterine Fibroids
Preventing Injuries from Falls in the
Treatment Options for Back Pain
Obesity Treatment in Diverse
Long-term Approach to Targeted Research:
PCORI Advisory Panels
Will include clinicians, researchers,
patients, and other experts with
appropriate experience and knowledge to
help us achieve our goals
Will assure meaningful patient
Identifying research priorities and topics
Conducting randomized clinical trials
Performing special research studies
Applications period closed March 4
Panels announced in late March
Key Comparative Questions in Rural Health
Access to primary care, including OB/GYN, and
• Role of non-physician providers
• Retention of providers
• Telemedicine, health information technology, and health
Rural economic conditions
• Economic health of hospitals/facilities
Care coordination, particularly for chronic conditions
• Aging, Alzheimer’s, heart failure, mental health, oral health, renal
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
Building A Team: Patient/Stakeholder –
Sue Sheridan, MIM, MBA
Director, Patient Engagement
March 10, 2013
Methodology Standards Associated with
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
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
Review Criterion 7: Team and Environment
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
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
3. Impact on Healthcare
5. Rigorous Research Methods
6. Inclusiveness of Different
7. Team and Environment
8. Efficient Use of Resources
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
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
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
Submission materials: slide deck (5 slides),
overview doc (5 pgs), video demo (5 min), link to
working app (optional)
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
Particular challenges of serving "hard-to-reach"
audiences: ethnic & racial minorities, rural pops,
the elderly, physically challenged and non-English
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
From Partnerships to Proposals
Sue Sheridan, MIM, MBA
Proposed by participants at
October 2012 Transforming
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
Expedite building “community”
Strengthen reciprocal relationships between researchers and non-
Support capacity building, co- learning, creating research questions and
the development of a sustainable infrastructure to facilitate “research
Accelerate proposal submission (or re-submission) to PCORI or other
PCOR related research institutes
Fast track implementation