S.t.a.r. initiative 2013 review

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S.t.a.r. initiative 2013 review

  1. 1. 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 1
  2. 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 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 2014 Healthcare Research Associates, LLC All Rights Reserved 2
  3. 3. 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 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 2014 Healthcare Research Associates, LLC All Rights Reserved 3
  4. 4. S.T.A.R. INITIATIVE © Strategically Targeting Appropriate Researchers 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 October 2012 Patient/Stakeholder Meeting and vulnerable populations. 2014 Healthcare Research Associates, LLC All Rights Reserved 4
  5. 5. S.T.A.R. INITIATIVE © Strategically Targeting Appropriate Researchers 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 2014 Healthcare Research Associates, LLC All Rights Reserved 5
  6. 6. 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. 2014 Healthcare Research Associates, LLC All Rights Reserved 6
  7. 7. S.T.A.R. INITIATIVE © Strategically Targeting Appropriate Researchers 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 2014 Healthcare Research Associates, LLC All Rights Reserved 7
  8. 8. 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 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. 2014 Healthcare Research Associates, LLC All Rights Reserved 8
  9. 9. S.T.A.R. INITIATIVE © Strategically Targeting Appropriate Researchers 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 2014 Healthcare Research Associates, LLC All Rights Reserved 9
  10. 10. S.T.A.R. INITIATIVE © Strategically Targeting Appropriate Researchers 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. 2014 Healthcare Research Associates, LLC All Rights Reserved 10
  11. 11. S.T.A.R. INITIATIVE © Strategically Targeting Appropriate Researchers UIC CEAB CONSULTATION RECOMMENDTIONS The board was very impressed with Regina’s presentation on her project 2014 Healthcare Research Associates, LLC All Rights Reserved 11
  12. 12. S.T.A.R. INITIATIVE © Strategically Targeting Appropriate Researchers 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 2014 Healthcare Research Associates, LLC All Rights Reserved 12
  13. 13. S.T.A.R. INITIATIVE © Strategically Targeting Appropriate Researchers 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. 2014 Healthcare Research Associates, LLC All Rights Reserved 13
  14. 14. 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 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. 2014 Healthcare Research Associates, LLC All Rights Reserved 14
  15. 15. 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 2014 Healthcare Research Associates, LLC All Rights Reserved 15
  16. 16. 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 16
  17. 17. 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 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 2014 Healthcare Research Associates, LLC All Rights Reserved 17
  18. 18. S.T.A.R. INITIATIVE © Strategically Targeting Appropriate Researchers 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 2014 Healthcare Research Associates, LLC All Rights Reserved 18
  19. 19. 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 19
  20. 20. S.T.A.R. INITIATIVE © Strategically Targeting Appropriate Researchers 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 2014 Healthcare Research Associates, LLC All Rights Reserved 20
  21. 21. 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=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. 2014 Healthcare Research Associates, LLC All Rights Reserved 21
  22. 22. 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 2014 Healthcare Research Associates, LLC All Rights Reserved 22
  23. 23. S.T.A.R. INITIATIVE © Strategically Targeting Appropriate Researchers PARTNERSHIPS AND COLLABORATIONS New and Continuing Collaborations with Researchers, Communities and Stakeholders 2014 Healthcare Research Associates, LLC All Rights Reserved 23
  24. 24. 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- coming soon 7. African-Americans and Clinical Trials All available on S.T.A.R. Initiative website 2014 Healthcare Research Associates, LLC All Rights Reserved 24
  25. 25. 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*** 2014 Healthcare Research Associates, LLC All Rights Reserved 25
  26. 26. 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 2014 Healthcare Research Associates, LLC All Rights Reserved 26
  27. 27. S.T.A.R. INITIATIVE © Strategically Targeting Appropriate Researchers 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 October 2012 Patient/Stakeholder Meeting 2014 Healthcare Research Associates, LLC All Rights Reserved 27
  28. 28. 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 2014 Healthcare Research Associates, LLC All Rights Reserved 28

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