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Discussions on Diversity

The recent events of the racial justice movement and the disproportionate impact of the COVID-19 pandemic, particularly within Black, Latinx, Asian and Indigenous communities, highlight the need for more equitable access to healthcare and clinical trials. Listening and learning from patients and physicians about critical barriers and ways to overcome them are therefore important steps to successfully achieving meaningful change.

Through this report and the series of reports and white papers to follow, we will share feedback from both our quantitative and qualitative research sources to support greater understanding and highlight areas for action.

What's In The Report

A brief overview of the insights we've gained and the
methods leveraged to produce this report.

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Key Findings

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Building Relationships & Trust

Key insight

"...It’s not to be underestimated how folks really are fearful of getting involved."

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Research Awareness and Understanding

Key insight

"We need you in the neighborhood helping these people."

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COVID-19 Perceptions

Key insight

"Some people are scared to take vaccines because they think it will make them feel ill."

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Increasing Research Involvement

Key insight

"...There must be an offer of employment and sponsorship..."

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Practical Barriers

Key insight

"In Queens, New York City, we have 250 languages."

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Decentralized Clinical Trials (DCTs)

Key insight

"Many don’t want healthcare professionals coming to their houses..."

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Institutional and Structural Racism

Key insight

"Training and pro-active awareness aren’t enough"

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Trial Feasibility

Key insight

"Coming up with a script that really explains the “why” is so critical..."

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Disease Perceptions

Key insight

"In the Black community, people don’t like to talk about illness."

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Conclusion

Research participants have stated clearly that trust-building and community engagement are needed to engage and recruit participants from communities that have historically been underrepresented in clinical research. Long-term openness, transparency, support and the common goal of improving the health of everyone are required to enable meaningful change.

Inclusion of diverse participants and investigators is central to achieving excellence in research. Now more than ever, we need to focus on achieving excellence through inclusion.
Dr. Sherri-Ann Burnett-Bowie, Physician Focus Group Participant

To summarize, overcoming racial, ethnic and cultural disparities in the clinical-research industry will depend on efforts that engage on multiple fronts, including:

  • Building trust through sustained patient and trusted community-advocate engagement, and improved medical-staff diversity
  • Providing patients and physicians with education and opportunities to join trials
  • Industry stakeholders addressing their own staff diversity, site engagement and feasibility practices to positively alter their approach to optimizing diversity in clinical research
  • Explaining the nature of a potential trial with simple language, using relevant channels of communications and engaging trusted advocates who relate to respective cultural and socioeconomic backgrounds
  • Exercising awareness of what is being asked of communities to take part in research
  • Reducing or eliminating the logistical challenges created by taking part in research
  • Investment in training new and future researchers and supporting their advancement to leadership roles in academic- and industry- based clinical research
  • Investment in building research capacity in community-based research sites within diverse communities

If clinical trials are to be effective measures in informing us about the promise of new treatments, we must also then be committed to doing what is required to ensure a demographically representative population in these clinical trials. Even though these nuanced issues are often challenging and complex, through collaboration and outreach, many barriers to clinical-trial diversity can be overcome.

Now, with a broadened perspective and greater understanding of the critical areas to address, we invite our industry colleagues to reflect together on diversity practices and identify opportunities to improve engagement with sites and patients from different racial and ethnic communities. By putting patients first, we have a clear opportunity to enhance research access for patients around the world.
Jamie Macdonald, Parexel CEO

Acknowledgements

This report incorporates learnings and insights from data derived from a series of surveys and patient/physician focus groups, which gathered insights concerning various topics on clinical trial diversity. We thank all participants for their time, openness and expertise. While many were anonymous, we are pleased to acknowledge those who were not, namely:

Physicians and Site Staff Focus Group Participants

  • Dr. Chika Anekwe
    Obesity Medicine Physician, Massachusetts General Hospital; Instructor in Medicine, Harvard Medical School, Boston, MA, USA
  • Minnie Baylor-Henry
    President, B-Henry & Associates, Boston, MA, USA
  • Dr. Sherri-Ann M. Burnett-Bowie
    Assistant Professor of Medicine, Harvard Medical School and Director, Multicultural Affairs, Massachusetts General Hospital, Boston, MA, USA
  • Dr. Jacques Carter
    Assistant Professor of Medicine, Harvard Medical School, Cambridge, MA, USA
  • Wanda McClain
    Former Vice-President, Community Health and Health Equity, Brigham Health, Boston, MA, USA
  • Dr. Shelly McDonald-Pinkett
    Chief Medical Officer, Howard University Hospital, Washington, DC, USA
  • Dr. Oludamilola Olajide
    Hematologist/Oncologist, University of North Carolina REX Healthcare, Chapel Hill, NC, USA
  • Dr. John Otasowie
    Consultant Child and Adolescent Psychiatrist at the Fraser Health Authority Surrey Memorial Hospital, BC, Canada
  • Dr. Kaya Oyejide
    Family Medicine Physician, University of Pennsylvania, Philadelphia, PA, USA
  • Dr. Fabian Sandoval
    CEO, Emerson Clinical Research Institute, Falls Church, VA, USA
  • Dr. Valerie Stone
    Professor of Medicine, Harvard Medical School; Vice-Chair for Diversity, Equity, and Inclusion at Brigham and Women’s Hospital, Boston, MA, USA
  • Dr. Winfred Williams
    Associate Chief, Division of Nephrology & Transplant; Founding Director for Center for Diversity and Inclusion, Massachusetts General Hospital, Boston, MA, USA
  • Dr. Kathleen Young
    Psychiatrist, New York, NY, USA

Patient Advisory Council Members

  • Trishna Bharadia
    Health Advocate and Patient Engagement Champion, UK
  • Ivis Febus-Sampayo
    Patient Advocate, Chief Officer of Diversity and Inclusion and Senior Director of Public Outreach at SHARE Cancer Support, USA
  • Sheila Khawaja
    Rare Disease Patient Advocate and World Alliance of Pituitary Organizations Board Member, Italy
  • Malini Raj
    Patient Advocate, Non-Executive Director of the Australian Pituitary Foundation and Board Advisor for the World Alliance of Pituitary Organizations, Australia
  • Alfred Samuels
    Keynote and Public Speaker, Patient Advocate and Author, UK
  • Grace Samuels
    Retired NHS Nurse, Care Quality Commission Specialist Advisor, Patient Caregiver and Advocate, UK
  • Yasmeem Watson
    Research, Patient and Consumer Advocate, USA

PAREXEL TEAM MEMBERS

  • Elisa Galvez
    Feasibility Leader
  • Kushal Gohil
    Vice-President, Corporate Strategy and Innovation
  • Nichola Gokool
    Senior Director, Medical Communications
  • Mwango Kashoki
    Vice-President, Regulatory Affairs
  • Andreza Martins
    Project Specialist, Patient Innovation Center
  • Sarah Pilkington
    Associate Director, Patient Innovation Center
  • Rosamund Round
    Vice-President, Patient Innovation Center
  • Baljit Samra
    Corporate Vice-President, Clinical Operations
  • Altair Silva
    Director, Patient Recruitment Strategy Group

The contents of this report are the opinions of third parties derived from surveys, focus group sessions, interviews and patient advisory group meetings and do not reflect the opinions or positions of Parexel or its affiliates.

Discussions on Diversity Report

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Executive Summary

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