S.t.a.r. initiative 2013 review

African-American Women Selecting Researchers for
Patient-Centeredness in Research Design for
Shared Decision-Making & Better Health Outcomes

FY 2013 Review

2014 Healthcare Research Associates, LLC All Rights Reserved

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S.T.A.R. INITIATIVE

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Strategically Targeting Appropriate Researchers

The Journey to
Meaningful Engagement & Research Participation 2013
Pre-Research Engagement, Conversations, and participation
with Underserved and Communities of Color
For Patient-Centered Outcomes Research

I.
II.
III.
IV.

Beginnings
The Awards
Consultations
Engagement
I. Governance Structure of Member Clusters
V. Onward
Regina Greer-Smith & Knitasha Washington at PCORI
October 2012 Patient/Stakeholder Meeting


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S.T.A.R. INITIATIVE

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African-American Women
Selecting Researchers for
Patient-Centeredness in Research
Design for
Shared Decision-Making &
Better Health Outcomes

Regina Greer-Smith MPH FACHE
President-Healthcare Research Associates, LLC
Principal Investigator and Creator of
The S.T.A.R. Initiative
Member- PCORI Advisory Panel on Patient Engagement


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S.T.A.R. INITIATIVE

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I.

THE BEGINNING

“We’ve got to do something with the
amazing energy and passion from this
meeting”
So we made some notes on a napkin
The Midwest Partners Patient
Engagement Cluster LLC was formed
(MPPEC).
We began to explore what opportunities
PCORI may have to address the
Regina Greer-Smith & Knitasha Washington at PCORI disparities in research for underserved
and vulnerable populations.

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S.T.A.R. INITIATIVE

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I.

BEGINNINGS

January 2013, I took the leap of faith and designed
The S.T.A.R. Initiative©
at my kitchen table, sharing with two friends.

I entered the concept into the Health 2.0/ PCORI Challenge and won
an Honorable Mention in the Concept Category
I got busy; the expectations were high and it was a huge responsibility

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THE S.T.A.R. INITIATIVE

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A culturally appropriate methodology for minority communities to
identify, select, & involve researchers capable of engaging communities to
conduct Patient-Centered Outcomes Research (PCOR). It is an opportunity for
minority communities to be involved in research as never before by selecting
researchers who are sensitive to the needs of the minority communities.
Patient Engagement Clusters ©are formed in the community. They will be the
community advisory teams that will engage as” who will select the
researcher, work in the planning and design, and finally, dissemination of the
results. There will be a strong educational component to ensure that the
community is knowledgeable of research.

The S.T.A.R. INITIATIVE

©

It’s universal, replicable, scalable, for any community, population, & group.

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S.T.A.R. INITIATIVE

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A Strategic Plan for Recruiting Researchers by Minority Communities
•Researchers who are in a position and interested to engage minority
communities
•Researchers who can help to answer the questions that are most important to
minority patients/caregivers/stakeholders.
•Minority communities are involved in every step of the research from partnering
in the design of the research to the dissemination and sharing of the results
•Poor/Negative relationship between medical centers and community are
identified, addressed, and removed.

•Minority communities and researches maintain relationships to continuously
engage and design of questions for more research

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S.T.A.R. INITIATIVE

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The major components of The S.T.A.R. Initiative© are:
•Developing a mobile app that enables the African-American women to
select the appropriate researchers.
•A comprehensive educational curriculum that provides health literacy
and education for African-American women that is culturally appropriate
so that they become well-informed on a breast cancer.

•A comprehensive educational curriculum for researchers to become
acquainted and well-informed in engaging African-American Women.
•African -American women become “champions” for PCOR in the
community, promote community participation and continue to identify
researchers for more studies via the mobile app.

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S.T.A.R. INITIATIVE

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II. 2013 AWARDS
OUTREACH EXPRESS
National Network of Libraries of Medicine
In August, 2013,The S.T.A.R. Initiative received an
Outreach Express Award from the National Network
of Libraries of Medicine/Greater Midwest Region
The funds will support outreach materials,
notebooks, participant stipends, and meeting costs.
We were also provided with a NIH Research
Librarian to provide training and research for
consumer health information from Medline Plus

PCORI CHALLENGE AWARD
Honorable Mention-Concept
In June, 2013, The S.T.A.R. Initiative received an
Honorable Mention in the Concept Category
S. T. A. R. INITIATIVE, an initiative consisting
of a mobile app would enable
African-American women to connect with
researchers and educational curricula

http://www.pcori.org/2013/challenge/

http://nnlm.gov/gmr/funding/outreach/recipients.
html


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S.T.A.R. INITIATIVE

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III. CONSULTATIONS
The S.T.A.R. Initiative has received two
Community-based participatory research
consults from The University of Illinois
Community Engagement Advisory Board
(CEAB) since June 2013
Dr. Carol Ferans (front center) and The
CEAB continue to advise and support
The S.T.A.R. Initiative as we progress.
I serve as a member and am standing in
the rear row, third from the right.


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S.T.A.R. INITIATIVE

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UIC CEAB CONSULTATION RECOMMENDTIONS
The board was very impressed with Regina’s presentation on her project


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S.T.A.R. INITIATIVE

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PARTNERS FOR ENGAGEMENT, EVALUATION, AND SUPPORT SERVICES

RESEARCH PARTNERS/ADVISORS
•
•
•
•

Dr. Carol Ferans and Marilyn Willis, MS - University of Illinois at Chicago
Dr. Emily Anderson -Loyola University
Dr. Diane Ingram -Rush University Medical Center
Dr. Rebecca Emily Johnson –Northwestern, Buehler Center on Aging, Health and Society

STRATEGY/PLANNING
•

Jay Silver –Executive Director-Retired- Intercultural Cancer Council – Baylor College of Medicine

PROFESSIONAL SERVICES
•
•

Unique Solutions – Web Hosting and Social Media (minority-owned)
Lighthouse Printing – Design and Marketing

FUNDING
•
•

Patient-Centered Outcomes Research Institute –PCORI – Challenge Award
National Network of Libraries of Medicine/Greater Midwest Region- Outreach Express Award


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S.T.A.R. INITIATIVE

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IV. ENGAGEMENT
Engagement Clusters©
The S.T.A.R Initiative engages the community by forming “Engagement
Clusters” of 15-20 patients, caregivers, and/or stakeholders committed to
learning of the benefits of patient-centered outcomes research for shared
decision-making and better health outcomes.
Meetings are held monthly, we continue to increase participation, and
share information, text to alert of resources on The S.T.A.R. Initiative
website.

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S.T.A.R. INITIATIVE

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The S.T.A.R. logo was designed from
“Awareness Ribbons”
into an identifiable brand which focuses on diseases
and health conditions
that impact each community.
The Engagement Clusters© will select the
disease and/or health condition that impacts them.

The Engagement Clusters will rotate the ribbon to
the top as those diseases and/or health conditions
are chosen.
The Engagement Cluster will partner with their
chosen research partner(s) to develop topics and
questions from their “Top” awareness ribbon.
The “North Awareness Ribbon” will be different for
each community.

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S.T.A.R. INITIATIVE

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www.healthcarera.com/home

Email, Text Messages, and
In-person Engagement
Remain Engaged 24/7
Anywhere & Anytime
Scan the QR Code to learn more
Facebook, Twitter, LinkedIn


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S.T.A.R. INITIATIVE

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Joining The S.T.A.R. Initiative is Simple
Join during information sessions or downloadable from the S.T.A.R. Website


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S.T.A.R. INITIATIVE

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ENGAGEMENT CLUSTERS 12/31/13 and 2014
Expanding to all Vulnerable/Underserved Populations

Latina
Engagement
Cluster
V. Gines
Texas
2014

St. Bernard Hospital
and Health Center
Engagement Cluster
Derek Michaels
2014

VESSELS OF VIRTUE
ENGAGMEN T
CLUSTER
VCIM
2013
HEART 2 HEART
ENGAGEMENT
CLUSTER
FGCAI
2013

S.T.A.R. INITIATIVE
ENGAGEMENT CLUSTERS
Community & Researcher
Partnerships

GREAT RIVER
ENGAGEMENT
CLUSTER
Pastor Bruce Hanson
Rural
Iowa
2014

PASTORS FOR PCOR
RESEARCH MNISTRIES
ENGAGEMENT
CLUSTER
Southland Ministerial
Health Network
2013

ENGAGMENT
CLUSTER
AT LARGE
MEMBERS
2013

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S.T.A.R. INITIATIVE

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GOVERNANCE STRUCTURE
GOVERNED BY REPRESENTATIVES FROM EACH CLUSTER

VESSELS OF VIRTUE
ENGAGMEN T
CLUSTER
Latina
Engagement
Cluster
V. Gines
Texas

Englewood
Community
ENGAGEMENT
CLUSTER

HEART 2 HEART
ENGAGEMENT
CLUSTER

S.T.A.R. INITIATIVE
ENGAGEMENT CLUSTERS
GOVERNING BOARD

GREAT RIVER
ENGAGEMENT
CLUSTER
Pastor Bruce Hanson
Rural
Iowa

PASTORS FOR PCOR
RESEARCH MNISTRIES
ENGAGEMENT
CLUSTER
Southland Ministerial
Health Network

ENGAGMENT
CLUSTER
AT LARGE
MEMBERS
2013

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S.T.A.R. INITIATIVE

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Our First Community Engagement Clusters
1.
2.
3.
4.

Victory Christian International Ministries –Vessels of Virtue Markham, IL –
23 members
Full Gospel Christian Assemblies International – Hazel Crest, IL –
18 members
“At Large”
4 members
In Progress – inquiries from 2 universities, 1 library, 9 churches, & 1 beauty salon


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S.T.A.R. INITIATIVE

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RESEARCH MINISTRIES WITH FAITH-BASED PARTNERS
Bringing Research Justice, Awareness and Engagement
To Congregations and Communities of Color

Faith-based Partners committed to patient-centered outcome research
in minority and communities of color and research justice


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S.T.A.R. INITIATIVE

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Blog: National Partnership for Action
BLOGGING FOR THE OFFICE OF MINORITY HEALTH
Smartphone and mobile apps: An important solution to increasing participation
and engagement of minority and underserved communities
Posted on 8/22/2013 by Regina Greer- Smith, MPH FACHE

http://minorityhealth.hhs.gov/npa/blog/BlogPost.aspx?BlogType=O&BlogID=2886
The NPA works to achieve health equity -- the highest level of health for all
people. This blog is a venue for professionals from all fields and sectors to share
their thoughts on pressing issues, news and events pertaining to health equity.
Follow and participate in this candid discussion.

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S.T.A.R. INITIATIVE

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ACTIVITIES and 2014 PLANS
1. Monthly Meetings – Monthly calendar developed
2. Online learning/sharing
3. Group Meeting on Feb 21 and 28 for CBPR Training
• Emily Anderson, PhD-Loyola University
4. Conversations with Researchers (TBA)
• Webinars, conference calls, text messaging
5. Evaluation
6. More Clusters, Partnerships, Researchers, and Engagements


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S.T.A.R. INITIATIVE

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PARTNERSHIPS AND COLLABORATIONS
New and Continuing Collaborations with Researchers, Communities and Stakeholders


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S.T.A.R. INITIATIVE

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Curriculum and Resources
1. Received use of services of Research Librarian from NNLM to
research education content and training
2. MedlinePlus
3. PCORI 101
4. Beating Breast Cancer - Video
5. CIRTification - Human Subject Curriculum –workshop/training for
Feb 21 and Feb 28
6. PCORI Ambassador Training- coming soon
7. African-Americans and Clinical Trials

All available on S.T.A.R. Initiative website


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S. T. A. R. Initiative©
“S.T.A.R. GROUP” COLLABORATES
WITH APP DEVELOPER TO CREATE
”S.T.A.R.” APP BASED ON WELLDEFINED CRITERIA FOR RESEARCHER

APP ENGINEER & “S.T.A.R. GROUP”
REVIEW RESEARCHER APPLICANTS
AND DECIDE THOSE WHO ARE BEST
FIT TO DESIGN RESEARCH



“ S.T.A.R. “ APP ENGINEER
DEVELOP/TESTS/LAUNCHES

RESEARCHERS “APPLY” TO “S.T.A.R.”

“S.T.A.R.” APP

“S.T.A.R. GROUP CONDUCTS “INPERSON” INTERVIEWS TO MEET
RESEARCHER CANDIDATES

BY DEADLINE DATE VIA
ONLINE APPLICATION

“S.T.A.R. GROUP “CROWD-SOURCES” TO
SELECT FINAL RESEARCHER

***FINAL RESEARCHER SELECTED***


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S.T.A.R. INITIATIVE©

SOUTHLAND MINISTERIAL HEALTH NETWORK
RESEARCH MINISTRY for REARCH JUSTICE

FEINBERG SCHOOL OF MEDICINE BUEHLER CENTER FOR AGING, HEALTH, AND SOCIETY
DEC 3, 2013


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S.T.A.R. INITIATIVE

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V.

ONWARD

THE S.T.A.R. NETWORK (national)
• More Patient/community Clusters
• More Partners
• More Engagement

MORE F U N D I N G
Regina Greer-Smith & Knitasha Washington at PCORI


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S.T.A.R. INITIATIVE

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THANK YOU

Regina Greer-Smith MPH FACHE
Healthcare Research Associates, LLC
Engage Us at:
www.healthcareRA.com
Email
regina@healthcarera.com
Mobile
708 764 9607
Fax
708 335 0519
Twitter
rgreersmith
LinkedIN reginagreersmith

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S.t.a.r. initiative 2013 review

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