s.t.a.r. initiative 2013 review

The S.T.A.R. Initiative©

Strategically Targeting Appropriate Researchers 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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S.T.A.R. INITIATIVE© Strategically Targeting Appropriate Researchers

The Journey to

Meaningful Engagement & Research Participation 2013Pre-Research Engagement, Conversations, and participation

with Underserved and Communities of Color

For Patient-Centered Outcomes Research

I. BeginningsII. The AwardsIII. ConsultationsIV. Engagement

I. Governance Structure of Member ClustersV. Onward

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Regina Greer-Smith & Knitasha Washington at PCORIOctober 2012 Patient/Stakeholder Meeting

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Regina Greer-Smith MPH FACHEPresident-Healthcare Research Associates, LLC

Principal Investigator and Creator of The S.T.A.R. Initiative

Member- PCORI Advisory Panel on Patient Engagement


African-American Women Selecting Researchers for

Patient-Centeredness in Research Design for

Shared Decision-Making & Better Health Outcomes

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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

disparities in research for underserved and vulnerable populations.

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I. BEGINNINGS

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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© 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 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.


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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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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II. 2013 AWARDS

OUTREACH EXPRESSNational 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

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


PCORI CHALLENGE AWARDHonorable Mention-Concept

In June, 2013, The S.T.A.R. Initiative received an

Honorable Mention in the Concept CategoryS. 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://www.pcori.org/2013/challenge/

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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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UIC CEAB CONSULTATION RECOMMENDTIONS

The board was very impressed with Regina’s presentation on her project


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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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IV. ENGAGEMENT

Engagement Clusters©

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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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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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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


http://www.healthcarera.com/home

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


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

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S.T.A.R. INITIATIVE

ENGAGEMENT CLUSTERS

Community & Researcher

Partnerships

VESSELS OF VIRTUE

ENGAGMEN T CLUSTER

VCIM

2013

ENGAGMENT CLUSTER

AT LARGE

MEMBERS

2013

PASTORS FOR PCOR

RESEARCH MNISTRIES

ENGAGEMENT

CLUSTER

Southland Ministerial Health Network

2013

HEART 2 HEART

ENGAGEMENT

CLUSTER

FGCAI

2013

GREAT RIVER

ENGAGEMENT CLUSTER

Pastor Bruce Hanson

Rural

Iowa

2014

St. Bernard Hospital and Health Center

Engagement Cluster

Derek Michaels

2014

Latina Engagement

Cluster

V. Gines

Texas

2014

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GOVERNANCE STRUCTURE GOVERNED BY REPRESENTATIVES FROM EACH CLUSTER

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S.T.A.R. INITIATIVE

ENGAGEMENT CLUSTERS

GOVERNING BOARD

VESSELS OF VIRTUE

ENGAGMEN T CLUSTER

ENGAGMENT CLUSTER

AT LARGE

MEMBERS

2013

PASTORS FOR PCOR

RESEARCH MNISTRIES

ENGAGEMENT

CLUSTER

Southland Ministerial Health Network

HEART 2 HEART

ENGAGEMENT

CLUSTER

GREAT RIVER

ENGAGEMENT CLUSTER

Pastor Bruce Hanson

Rural

Iowa

Englewood

Community

ENGAGEMENT

CLUSTER

Latina Engagement

Cluster

V. Gines

Texas

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Our First Community Engagement Clusters1. Victory Christian International Ministries –Vessels of Virtue Markham, IL – 23

members2. Full Gospel Christian Assemblies International – Hazel Crest, IL – 18 members3. “At Large” 4 members 4. In Progress – inquiries from 2 universities, 1 library, 9 churches, & 1 beauty salon


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RESEARCH MINISTRIES WITH FAITH-BASED PARTNERSBringing Research Justice, Awareness and Engagement

To Congregations and Communities of Color

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


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Blog: National Partnership for Action

BLOGGING FOR THE OFFICE OF MINORITY HEALTHSmartphone 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.


http://minorityhealth.hhs.gov/npa/blog/BlogPost.aspx?BlogID=2886

http://minorityhealth.hhs.gov/npa/blog/BlogPost.aspx?BlogType=O&BlogID=2886

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ACTIVITIES and 2014 PLANS

1. Monthly Meetings – Monthly calendar developed2. Online learning/sharing3. Group Meeting on Feb 21 and 28 for CBPR Training

• Emily Anderson, PhD-Loyola University4. Conversations with Researchers (TBA)

• Webinars, conference calls, text messaging5. Evaluation6. More Clusters, Partnerships, Researchers, and Engagements


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PARTNERSHIPS AND COLLABORATIONSNew and Continuing Collaborations with Researchers, Communities and Stakeholders


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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 1014. Beating Breast Cancer - Video5. CIRTification - Human Subject Curriculum –workshop/training for

Feb 21 and Feb 286. PCORI Ambassador Training- coming soon7. African-Americans and Clinical Trials

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



The S.T.A.R. MOBILE APP

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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 WELL-DEFINED CRITERIA FOR

RESEARCHER


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

“S.T.A.R.” APP


RESEARCHERS “APPLY” TO “S.T.A.R.” BY DEADLINE DATE

VIA

ONLINE APPLICATION


APP ENGINEER & “S.T.A.R. GROUP” REVIEW RESEARCHER

APPLICANTS AND DECIDE THOSE WHO ARE BEST FIT TO DESIGN

RESEARCH


“S.T.A.R. GROUP CONDUCTS “IN-PERSON” INTERVIEWS TO

MEET RESEARCHER CANDIDATES

S. T. A. R. Initiative©“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 JUSTICEFEINBERG SCHOOL OF MEDICINE BUEHLER CENTER FOR AGING, HEALTH,

AND SOCIETY DEC 3, 2013


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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

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THANK YOU

Regina Greer-Smith MPH FACHE Healthcare Research Associates, LLC

Engage Us at:www.healthcareRA.comEmail [email protected] 708 764 9607Fax 708 335 0519Twitter rgreersmithLinkedIN reginagreersmith


http://www.healthcarera.com/

s.t.a.r. initiative 2013 review

Health & Medicine

research engagement

research design

knowledgeable of research

recruiting researchers

appropriate methodology

appropriate researchersii

african american women

community participation