1. African-American Women Selecting Researchers for
Patient-Centeredness in Research Design for
Shared Decision-Making & Better Health Outcomes
FY 2013 Review
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2. S.T.A.R. INITIATIVE
©
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
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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3. S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
“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.
Regina Greer-Smith & Knitasha Washington at PCORI
October 2012 Patient/Stakeholder Meeting
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4. S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
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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5. THE S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
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
“judges” 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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6. S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
A Strategic Plan for Recruiting Researchers by Minority Communities
• Researchers who can work with 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
removed
• Minority communities and researches maintain relationships to continuously
engage and design of questions for more research
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7. S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
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 experts on a breast cancer.
• A comprehensive educational curriculum for researchers to become
acquainted and experts 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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8. S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
The S.T.A.R. Initiative has received two
CBPR 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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9. S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
UIC CEAB CONSULTATION RECOMMENDTIONS
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10. S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
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 patientcentered 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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11. S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
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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12. S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
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 north 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 “North” awareness ribbon.
The “North Awareness Ribbon” will be different for
each community.
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13. S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
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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14. S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
Joining The S.T.A.R. Initiative is Simple
Join during information sessions or downloadable from the S.T.A.R. Website
2014 Healthcare Research Associates, LLC All Rights Reserved
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15. S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
ENGAGEMENT CLUSTERS 12/31/13 and 2014
Expanding to all Vulnerable/Underserved Populations
Latina
Engagement
Cluster
V. Gines
Texas
2014
Englewood
Community
ENGAGEMENT
CLUSTER
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 MNISTRYIES
ENGAGEMENT
CLUSTER
Southland Ministerial
Health Network
2013
ENGAGMENT
CLUSTER
VIRTUAL
MEMBERS
2013
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16. S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
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
2014 Healthcare Research Associates, LLC All Rights Reserved
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17. S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
RESEARCH MINISTRIES WITH FAITH-BASED PARTNERS
Bringing Awareness and Engagement Congregations and Communities
Faith-based Partners committed to patient-centered outcome research in the community
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18. S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
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=2
886
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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19. S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
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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20. S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
PARTNERSHIPS AND COLLABORATIONS
New and Continuing Collaborations with Researchers, Communities and Stakeholders
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21. S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
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
7. African-Americans and Clinical Trials
All available on S.T.A.R. Initiative website
2014 Healthcare Research Associates, LLC All Rights Reserved
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22. S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
PARTNERS FOR ENGAGEMENT, EVALUATION, AND SUPPORT SERVICES
RESEARCHERS
•
•
•
•
Dr. Carol Ferans and Dr. Marilyn Wills 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 – Retired Executive Director of Intercultural Cancer Council –EDICT- Baylor
University
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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23. 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
S. T. A. R. Initiative©
APP ENGINEER & “S.T.A.R. GROUP”
REVIEW RESEARCHER APPLICANTS
AND DECIDE THOSE WHO ARE BEST
FIT TO DESIGN RESEARCH
S. T. A. R. Initiative©
S. T. A. R. Initiative©
“ 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. Initiative©
“S.T.A.R. GROUP CONDUCTS “INPERSON” INTERVIEWS TO MEET
RESEARCHER CANDIDATES
BY DEADLINE DATE VIA
ONLINE APPLICATION
S. T. A. R. Initiative©
“S.T.A.R. GROUP “CROWD-SOURCES” TO
SELECT FINAL RESEARCHER
***FINAL RESEARCHER SELECTED***
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24. S.T.A.R. INITIATIVE
©
Strategically Targeting Appropriate Researchers
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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