Structural Solutions: Building Trustworthiness in Clinical Research
IMPACT REPORT
Structural Solutions for Diverse Cancer Trials (ASSETS) for Cook County
Aug 26, 2023 - Feb 26 2024
University of Illinois Cancer Center with support from Genentech Chicago, Illinois
Program Overview
Scientific advances in cancer treatment and delivery are not equitably accessible, in part due to the poor representation of underserved diverse communities in clinical trials. African Americans and Latinx represent ~32% of people in the United States, but consistently represent < 15% of participants in oncology clinical trials. Access to available trials is a major driver of disparities. Safety net facilities that disproportionately serve impoverished and un/underinsured African American and Latinx cancer patients are less likely to have ongoing clinical trials and face multilevel barriers to referring patients to local, available trials.
The University of Illinois Cancer Center (UICC) is uniquely positioned to address structural barriers to diverse clinical trial participation within Cook County, the third most populous county in and one of the few majority-minority counties in the United States. Its parent institution, UIC is a minority-serving institution with a safety-net academic medical center, 11 federally qualified health center (FQHC) sites, and 7 health sciences colleges/ schools. UICC is the hub of cancer research and care delivery to ensure scientific discovery and cures for cancer are developed and tested with underserved patients and their communities. For example, ~79% of clinical trial participants at UICC are racial/ethnic minorities and many are un/underinsured. Multiple structural solutions have contributed to this impressive accrual, including leveraging a shared data platform across hospital and FQHC sites, diverse medical trainee and provider community (e.g., top educator of Latinx physicians, top 5 for African American physicians), comprehensive financial assistance, investigator-initiated trials targeted to the cancer needs of underserved and diverse populations, and facilitation of industry trials in FQHC settings.
A major goal of UICC is to expand the reach and impact of structural solutions for increased diverse clinical trial participation via dissemination of best practices and building capacity for under resourced healthcare systems to facilitate patients’ access to trials. This project served to address that goal through our “Assets for Cook County” series, which focused on elevating awareness, capacity, and skills of safety-net / FQHC care teams to refer patients to local oncology trials.
Events
The ASSETS Series was comprised of five events, spanning from August 26, 2023 through February 26, 2024. The events were hosted in various locations around Cook County, also including a webinar made available to attendees around the U.S.
ASSETS III
ASSETS II
ASSETS IV
ASSETS V
ASSETS I
ASSETS I
Chicago State University, Academic Library, 9501 S. King Dr., Chicago, IL 60628
ASSETS II
Rush University Chicago, 600 S. Paulina St., Suite 524, Chicago, IL 60612
ASSETS III
Loretto Hospital, 645 S. Central Ave., 6th Floor Auditorium, Chicago, IL 60644
ASSETS IV Webinar
ASSETS V
Advocate South Suburban Hospital, 17800 Kedzie Ave., Auditorium, Hazel Crest, IL 60429
ASSETS I: Aug 26 (10:30am - 12:30pm)
Location:
Chicago State University, Academic Library, 9501 S. King Dr., Chicago, IL 60628
Event Description & Agenda:
This ASSETS workshop included one multistakeholder panel, during a larger community event, entitled 100 Black Men of Chicago Health & Wellness Expo.
ASSETS Attendees & Summary of Discussions:
There were approximately 30 attendees, including 5 healthcare professionals. Over 90% of the attendees identified as African American/Black.
Moderator, Dr. Yamilé Molina, introducing the panel discussion.
Thank you to Pamela Thomas-Hall for providing her experience as a survivor.
Cheese! We were able to capture a group picture of our amazing panelists and moderator.
PANEL 1
The Value Of Access To Trials: Patients / Clinical Trial Participants And Community Leaders
Pamela Thomas Hall UI Health patient and participant across multiple clinical trials Paris Thomas, PhD Executive Director for Equal Hope
Arielle Guzman Biorepository
Clinical Research Coordinator in the University of Illinois Cancer Center
Clinical Trials Office
Yvonne Collins, MD Chicago citywide coordinator for Delta Research Education Foundation Research Matters for All of Us
Questions:
• What was your overall experience in participating in a clinical trial?
• What is the role of patients in shaping clinical trials / making sure they fit individualized needs?
PANEL 2
The Infrastructure Of Access To Trials: Administrative Leader & Sponsor Perspectives
Keith Naylor, MD UI Health Gastroenterologist and Cancer Center member
Questions:
VK Gadi, MD, PhD University of Illinois Cancer Center Deputy Director
Sheron Robinson Director of Healthcare Market in Chicago, Genentech
• As leaders in a clinical trial infrastructure, how do you facilitate diverse, underserved populations’ access to clinical trials?
• What local partnerships and relationships does Genentech leverage for working to enhance diversity in clinical trial participation in Chicago?
ASSETS II: Oct 13 (3:00 -
4:50pm)
Location:
Rush University Chicago, 600 S. Paulina St., Suite 524, Chicago, IL 60612
Event Description & Agenda:
This ASSETS workshop included three multistakeholder panels during a larger conference tailored for Latinx healthcare professionals and trainees, entitled MOLA’s VII Annual Latinx Health Symposium.
ASSETS Attendees & Summary of Discussions:
There were 48 attendees in the audience, largely comprised of trainees, for example; pre-medical students, medical students and residents. Among them, 67% identified as Latinx, 38% as White, and 38% as Other.
Attendees were surprised to learn the range at which clinical trials can be exclusive to certain populations.
Dr. VK Gadi speaking on the importance of facilitating diverse, underserved populations’ access to clinical trials.
One of our survivors, Marta Soto, providing her experience of being on a clinical trial.
The audience enjoying the panel discussions.
Moderator
Ana Williams, DDS, MHA, MPH Senior Research Specialist at the Office of Community Engagement and Health Equity at the University of Illinois Cancer Center
Focused on discussing structural solutions to increase diverse clinical trial participation by disseminating best practices and building capacity for under-resourced healthcare systems facilitating patients’ access to trials.
PANEL 1
The Value Of Access To Trials: Patients / Clinical Trial Participants And Community Leaders
Paris Thomas, PhD Executive Director of Equal Hope
Questions:
Jeannette Carter University of Illinois Cancer Center Cancer Research and Patient Advocate
Marta Soto University of Illinois Cancer Center Clinical Trial Participant and UI Health Patient
• What was your overall experience in participating in a clinical trial?
• What is the role of patients in shaping clinical trials / making sure they fit individualized needs?
• How is Equal Hope leveraging your unique history and position in the Chicago safety net system to facilitate patients’ access to trials?
PANEL 2
The Feasibility Of Access To Trials: Clinical Research Staff And Provider Perspectives
Marisol Vega University of Illinois Cancer Center Clinical Research Coordinator
Questions:
Niraj Patel Sinai Chicago Research Manager
Ryan Nguyen, DO University of Illinois Cancer Center UI Health Medical Oncologist
• How do your organizations ensure that all eligible diverse patients are offered clinical trials?
• What strategies do you use to engage diverse patients about trials, given historic injustices?
PANEL 3
The Infrastructure Of Access To Trials: Administrative Leader and Sponsor Perspectives
VK Gadi, MD University of Illinois Cancer Center Deputy Director
Questions:
Terence Gipson, PhD
Sinai Chicago Senior Manager Health Services Research, Graduate Medical Education
Keith Dawson, DNP Roche/ Genentech Principal Portfolio Leader, Global Health Equity and Population Science
Lisa Nee, MD, MBA Genentech Principal Medical Affairs Executive Director
• As leaders in clinical trial infrastructure, how do you facilitate diverse, underserved populations’ access to clinical trials?
• What is the role of sponsors in facilitating diversity in clinical trial participation?
• What local partnerships and relationships does Genentech leverage for working to enhance diversity in clinical trial participation in Chicago?
ASSETS III: Nov 13 (1:00 - 4:00pm)
Location:
Loretto Hospital, 645 S. Central Ave., 6th Floor Auditorium, Chicago, IL 60644
Event Description & Agenda:
This ASSETS workshop was conducted in partnership with Loretto Hospital, a well-known safety-net hospital for the West Side of Chicago and nearby western suburbs. The workshop included three multi-stakeholder panels.
ASSETS Attendees & Summary of Discussions:
There were 63 attendees in the audience, of whom approximately 25% were doctors and researchers from many of the local hospitals and universities. Among the attendees, 14% identified as Latinx, 14% as Asian, 38% as Black, 3% as Middle Eastern North African, 24% as White, and 24% as Other.
The fabulous panelists gathered for a picture at the end of the event.
Our panelists spoke on their experiences of reaching diverse and underserved populations and how we can continue to expand this important work.
The audience had many thought-provoking quetions for our panelists.
Moderator
Yamilé Molina, MS, MPH, PhD Associate Director for Community Outreach and Engagement at the University of Illinois Cancer Center
Focused on being trustworthy in clinical care and research for our most vulnerable communities by discussing and brainstorming how to improve our systems to serve the widest breadth of communities with the greatest depth of quality care and equitable research.
PANEL 1
The Value of Clinical Trials in FQHC and Safety Net Facilities: Patient and Clinical Trial Participant Perspectives
Carol Gyimatey University of Illinois Cancer Center Clinical Trial Participant
Jeannette Carter University of Illinois Cancer Center Cancer Research and Patient Advocate
Marta Soto University of Illinois Cancer Center Clinical Trial Participant and UI Health Patient
Questions:
• What was your experience in being approached to participate in a clinical trial?
• Why is it so important to have diverse patients involved in the process of developing and rolling out clinical trials?
• Why is it valuable, in general, to have clinical trials in accessible spaces, like UI Health, Loretto Hospital, and West Suburban Medical Center?
• What are some strategies that systems should use to improve the experience of patients on trials? (e.g., dissemination of results; simpler review of trials).
The Feasibility of Access to Trials: Clinical Research Coordinators and Provider Perspectives
Lois Clarke, MD Loretto Hospital Chief Clinical Officer
Shalini Mohan, MD Head of Health Equity and Inclusive Research, U.S. Medical Affairs at Genentech
Questions:
VK Gadi, MD University of Illinois Cancer Center Deputy Director
Rochelle WilliamsBelizaire, MPH, CPH Director of Clinical Research Collaborations at Mirati Therapeutics
Manoj Prasad, MD, MBA, PhD, FACHE, CHCSP President and Group CEO of AUM Global Healthcare (dba Resilience Healthcare)
Tameika Graham, MPH Head of Feasibility Strategy and Analytics for Oncology and NonMalignant Hematology within Clinical Development and Operations at Pfizer
• As healthcare leaders, how are you helping to facilitate access to clinical trials among your diverse patient populations?
• What is the role of sponsors in facilitating diversity in clinical trial participation?
BREAKOUT GROUPS
Feasibility of Trials in FQHC and Safety-Net Settings and Ongoing Trials Led by the University of Illinois Clinical Trials Office
Meredith Russell Associate Director of Clinical Research Operations
Arielle Guzman Biorepository Clinical Research Coordinator
Omer Qazi Clinical Research Coordinator
Richard Shi Clinical Research Coordinator
ASSETS IV: Dec 14 (1:00 -
4:00pm)
Location:
Webinar (Zoom)
Event Description & Agenda:
This ASSETS workshop was conducted in partnership with Cancer Centers around the U.S., the NIH and Community Based Organizations (CBOs) focused on cancer research and survivorship. The workshop included four multi-stakeholder panels.
ASSETS Attendees & Summary of Discussions:
There were 403 registrants, nearly 40% of whom attended live, while the remaining people were sent the recording link to watch later. In the audience, approximately 50% were doctors and researchers from cancer centers and hospitals from around the country. Among the attendees, 13.2% identified as Latinx, 5.4% as American Indian or Alaskan Native, 13.5% as Asian, 35.1% as Black, 1% as Middle Eastern North African, 32.4% Native Hawaiian or Other Pacific Islander, 24.3% as White, and 7.9% as Other.
WELCOME AND OPENING REMARKS
Moving into an Era of Multilevel Trustworthiness
Jan Kitajewski, MD
University of Illinois Cancer Center Director
Moderator
Yamilé Molina, MS, MPH, PhD
Associate Director for Community Outreach and Engagement at the University of Illinois Cancer Center
Robert Winn, MD Director and Lipman Chair in Oncology of the VCU Massey Comprehensive Cancer Center
Marta Soto University of Illinois Cancer Center Clinical Trial Participant and UI Health Patient
Focused on successful examples of powerful structural solutions to diverse clinical trials, including decentralization of trials across networks and trial implementation in Federally Qualified Health Centers (FQHCs), safety-net facilities, and community hospitals.
PANEL 1
Building Equitable Infrastructure of Inclusive Clinical Trials for Diverse Populations: Academic Leader Perspectives
Electra Paskett, PhD
Associate Director for Population Sciences and Community Outreach in The Ohio State University Comprehensive Cancer Center
Questions:
Marvella Ford, PhD Associate Director of Population Science and Community Outreach and Engagement for Hollings Cancer Center
VK Gadi, MD
University of Illinois Cancer Center Deputy Director
• What multi-level structural interventions are your Cancer Centers using to improve patients’ access to clinical trials?
PANEL 2
Investments in Inclusive Clinical Trials with Equitable Access for Diverse Populations: Sponsor and Funder Perspectives
Ruma Bhagat MD, MPH Principal Portfolio Leader for Health Equity & Population Science, Product Development at Genentech, Inc. (A Member of the Roche Group).
Questions:
Rochelle WilliamsBelizaire, MPH, CPHD Director of Clinical Research Collaborations at Mirati Therapeutics
Karriem Watson, DHSc, MS, MPH Chief Engagement Officer for the All of Us Research Program at the National Institutes of Health
• What strategies does your group use to facilitate diversity in clinical trial participation?
• What structural solutions does your group use to help ensure our future investments in clinical research result in equitable representation and equitable health outcomes?
PANEL 3
Feasibility of Inclusive Trials with Equitable Access for Diverse Populations: Provider and Clinical Research Staff Perspectives
Betsy Adams, MD Medical Director of Cancer Services for Tidelands Health
Questions:
Arielle Guzman Clinical Research Coordinator in the University of Illinois Cancer Center Clinical Trials Office
Terri Matson Executive Director for Clinical and Translational Research at the VCU Massey Comprehensive Cancer Center
Mary Salazar, DNP, MSN, ANP-BC, RN Director of the Oncology Patient Experience in the Mays Cancer Center
• What has your organization done to be trustworthy to underserved populations?
• What are strategies that you, your team, and your organization use to engage diverse patients about trials, given historic and contemporary injustices?
The Value of Inclusive Clinical Trials with Equitable Access for Diverse Populations: Community Perspectives
Maimah Karmo Founder and CEO of the Tigerlily Foundation
Questions:
Ysabel Duron Founder and Executive Director of The Latino Cancer Institute
Pete Fronte President and CEO of Altura
• Why do systems need to be inclusive when designing and implementing clinical trials?
• Why is it so important to have trials in spaces that are already considered trustworthy, like FQHCs and safety net systems?
• What are the options and resources needed for community health centers to conduct clinical research?
• What are the main barriers to community health centers in conducting clinical trials?
• What are other strategies that we should invest in, to ensure we’re “baking” trustworthiness into our clinical trial infrastructure?
ASSETS V: Feb 26 (8:00 - 10:00am)
Location:
Advocate South Suburban Hospital, 17800 Kedzie Ave, Auditorium, Hazel Crest, IL 60429
Event Description & Agenda:
This ASSETS workshop was conducted in partnership with Advocate South Suburban Hospital, a well-known safety-net hospital for southern Cook County and nearby southern suburbs. The workshop included three multistakeholder panels.
ASSETS Attendees & Summary of Discussions:
There were 65 attendees in the audience, of whom approximately 50% were doctors and researchers from many of the local hospitals and universities. Among the attendees, 9.7% identified as Latinx, 9.7% as Asian, 61.3% as Black, 16.1% as Native Hawaiian or Other Pacific Islander, 12.1% as White, and 3.2% as Other.
The patient advocate and community based organizations panel spoke about the importance of communicating regularly with your healthcare team and being your own advocate.
Engaging and practical discussions took place during the breakout groups, each focusing on a different cancer; breast, lung, prostate & GI/GU.
Making connections: One of the outcomes of this series were the connections made with area hospitals and the sponsors who can support them.
Moderator
Yamilé Molina, MS, MPH, PhD Associate Director for Community Outreach and Engagement at the University of Illinois Cancer Center
Michelle Blakely, PhD, FACHE President of Advocate South Suburban and Advocate Trinity Hospitals
Focused on successful examples of powerful structural solutions to diverse clinical trials, including decentralization of trials across networks and trial implementation in Federally Qualified Health Centers (FQHCs), safety-net facilities and community hospitals.
PANEL 1
The Infrastructure of Clinical Trials in Safety Net and FQHC Systems: Provider and Sponsor Perspectives
VK Gadi, MD University of Illinois Cancer Center Deputy Director
Karen Cheek, RN, BS, CCRP Manager of Oncology Clinical Research across Advocate Aurora Health Midwest
Priyanka Reddy, MD, PhD Medical Oncologist at both Advocate Christ Medical Center in Oak Lawn and Advocate South Suburban Hospital in Hazel Crest
Ruma Bhagat MD, MPH Principal Portfolio Leader for Health Equity & Population Science, Product Development at Genentech, Inc.
Questions:
• As healthcare leaders, how are you helping to facilitate access to clinical trials among your diverse patient populations?
• What is the role of sponsors in facilitating diversity in clinical trial participation?
PANEL 2
The Value of Clinical Trials in Safety Net and FQHC Systems: Community Based Organizations and Suvivors Perspective
Paris Thomas, PhD
Executive Director of Equal Hope
Tatisa Joiner
Founder of the Tatisa C. Joiner Foundation
Jeannette Carter University of Illinois Cancer Center Cancer Research and Patient Advocate
Carol Gyimatey University of Illinois Cancer Center Clinical Trial Participant
Questions:
• What was your overall experience in participating in a clinical trial?
• What is the role of patients in shaping clinical trials / making sure they fit individualized needs?
• How is Equal Hope leveraging your unique history and position in the Chicago safety net system to facilitate patients’ access to trials?
BREAKOUT GROUPS
The Feasibility and Availability of Trials in Safety Net and FQHC Systems
Led by the Medical Oncologists, Researchers and Clinical Research Coordinators from the University of Illinois Cancer Center, UI Health and Clinical Trials Office.
Abiola Ibraheem, MD
Assistant Professor of Clinical Medicine, Department of Medicine, Division of Hematology and Oncology
Meredith Russell Associate Director of Clinical Research Operations
Ryan Nguyen, DO University of Illinois Cancer Center member and UI Health Medical Oncologist
Natalie Reizine, MD Physician and researcher in the Division of Hematology & Oncology at UI Health
Frank Weinberg, MD, PhD Medical Oncologist at UI Health
Arielle Guzman Clinical Research Coordinator
Ethan Gu Clinical Research Coordinator
Sasha Bratslavsky Clinical Research Coordinator
Content Summary
Discussion summary
Across diverse formats, the five ASSETS workshops incorporated perspectives from clinical trial participants, community and patient advocates, clinical research staff, healthcare providers, healthcare system leaders, and representatives from clinical trial sponsors (pharmaceutical companies, NIH All of Us). This rich representation resulted in a sharing of best practices / solutions. Clinical trial participants, all of whom were diagnosed with cancer, highlighted a wide range of awareness about clinical trials prior to their diagnosis and emphasized the importance of trustworthiness in communication throughout the process, not only during enrollment. Patient advocates and community advocates reflected on opportunities to guide clinical trial infrastructure and processes, as compensated partners. Opportunities referenced advocates as “honest brokers” who can navigate patients across different healthcare systems and who can discuss trials within the context of historic and contemporary injustices experienced in medical systems. Successful strategies also included participation in regulatory processes for clinical trials, to ensure the design and strategies of clinical trials align with the needs of patients, their families, and their larger communities. Clinical research staff, healthcare providers, and administrative leaders of healthcare systems reflected on their strategies for building a trustworthy environment to navigate patients to clinical trials, including assessment of fit between eligibility criteria for trials and patient populations, systematic screening and intervention for barriers to clinical trial participation (e.g., costs, travel), proactively hiring staff and providers that share backgrounds and identities with the minoritized communities they serve, mandating anti-bias training for all clinical research staff and providers, ensuring systemic screening for clinical trial eligibility (e.g., flow diagrams, workflows), and building authentic, meaningful rapport with patients, prior to discussions about clinical trials. Healthcare leaders further emphasized the interest and different capacity to implement clinical trials in community hospitals, federally qualified health centers, and safety-net systems, which often are embedded in the communities they serve (minimizing travel barriers) and primarily serve diverse populations historically excluded from clinical trials. Clinical trial sponsors reflected on their growing engagement and consideration of protocol development and site selection, to facilitate diverse representation in clinical trials, as well as a growing array of materials to increase awareness of clinical trials (e.g., Genentech’s Advancing Inclusive Research videos).
Overall themes: Below, we provide key lessons, takeaways, and calls to action from the diverse stakeholders who participated on panel discussions regarding trustworthiness in clinical trials. Exemplar quotes are verbatim or reflect paraphrased statements from detailed notes.
Key Lessons, Takeaways and Calls to Action
Clincal Trial Participants
Awareness of clinical trials remains low: Why did I have to get sick to learn about clinical trials?
Clinical trials can save lives: She explained to me the advantages and disadvantages, like the side effects [of the trial treatment]…I said from the beginning, I want to live. I don’t want to die. I want to do anything that is possible for me.
Dissemination of study results is critical to delivery of trustworthy clinical trials: You have me sign a 30-page consent form – and I want that level of information about what you found.
Participants’ growing awareness of the value in representative samples for clinical trials: It’s imperative that people of color are involved in clinical trials, because our DNA must be part of the solutions as well. We are dying more rapidly, not because there is no treatment – but there is no treatment specifically for our DNA.
Community and Patient Advocates
Trust building activities should not solely focus on sharing information about clinical trials: We cannot simply assume communities are uneducated, we must listen to community’s needs.
Patient and community advocates should be included in study design:
As a member of the Protocol Review Committee, I was the final stop to give approval. I got to tell them when protocols were not going to be appealing, because there were too many visits, for example.
There is a need for compensated community involvement to ensure systemic navigation to clinical trials across competing healthcare systems: Empowering community-based organizations and trusted messengers in trials is the heartbeat of a system that values patient experience. By bridging the gap with empathy, barriers fade, concerns are heard, and trust thrives.
Diversity in clinical trials is influenced by which sites offer clinical trials and their capacity to address structural solutions: Do studies in centers that have been ignored and aren’t prioritized and take the trials to these communities that need the attention.
Enhancing diversity in clinical trials requires systemic solutions at multiple levels:
When a provider is talking to a patient about clinical trial accruals, you’re not just bringing the provider and the patient into that encounter. The patient comes from a family in a community and the provider has colleagues, and they have their own community. So, we have to really encompass those multiple levels, if we really want to impact clinical trial accrual.
There are facility concerns about losing patients, if they provide external referrals for clinical trials. How can we support the medical clinics who we assume carries a high burden of patients who needs high level medical attention without seeming like we are overtaking their patients?
Safety net facilities are interested in clinical trial delivery & have varying capacity to implement trials, including access to CROs, delivery of non-therapeutic trials in the era of the COVID pandemic, and their own established clinical research office.
Clinical Trial Sponsors
Consideration of eligibility criteria and site selection is key to structural solutions for clinical trial diversity. We start all the way at the beginning, as we design our protocols…to ensure that we’re not excluding, through our inclusion / exclusion criteria or even the schedule of our assessments, patients who are affected by the disease. Then we take the studies to the sites where the patients are…that has been a huge focus, is finding the sites, which may not be typically participating in clinical trials, expanding our footprint, including community cancer centers and federally qualified health centers. We consider the burden for our patients as well as for our sites – because this is equally important, especially for those smaller sites.
Getting input from community oncology sites and advocacy groups is key for participatory solutions to successful inclusive clinical trial delivery and removal of practical barriers.
It’s absolutely collaborative, wherein we are engaging with community oncology sites, being mindful that each site is different, and understanding what their needs are, and then using that to formalize strategies. We’re able to work across differences in regulatory, clinical trials operations capacity, advocacy teams, as examples, to support the sites…taking away the burden from the sites and from the patients as well.
Expanded digital strategies, decentralized clinical trial services and strategies that address accessibility for inclusive trial delivery are critical. Place and space matters, so making sure that clinical trials are conducted in places and spaces where populations that face the greatest burden of disease get their key is so vital… Communitybased organizations are also at the table…we have national community organizations that are awarded and appropriately resourced to be at the table with us.
Post-Event Outcomes
Among the 625 attendees who have participated in remote and in-person ASSETS workshops, 95 completed post-event evaluation surveys.
Self-Identification of Race of Attendees
98% of participants indicated that the workshops were Very Good or Outstanding
95% said the workshops met and exceeded their epectations.
100% would recommend these workshops to colleagues in the future.
During and after workshops, attendees applauded conversations on trustworthiness, as a prerequisite to trust-building activities for clinical trials. Attendees emphasized the importance of learning how different sectors are working to enhance accessibility of clinical trials, including “bringing trials to the people”, navigators / outreach workers as “primers to clinical trial communication” and resourced partnerships with community partners and advocates (e.g., “compensating the people who contribute their community knowledge and experience for the improvement of clinical trial implementation”). Attendees also appreciated the importance of needing to “close the loop with patients post-trial” and the value of transparent, authentic dialogue with participants throughout the process of trials (e.g., “We have to be more transparent with the patient during and after the trial ends”).
After workshops, attendees and participants have engaged UICC about potential partnerships, including those that would facilitate navigation to clinical trials from their respective community and safety-net/ FQHC organizations. These emerging partnerships have critical and important implications for growing the footprint of collaborative clinical trials within the community and safety-net ecosystem of Cook County.
Thank you to our fabulous survivors, patient advocates and community partners! You are a necessary part of this discussion.
Thank you to Dr. Yamilé Molina for being a champion for underserved populations and leading the charge for these events
Thank you to all those who attended these events and contributed to the conversations.
Community
