Co-creation with underserved patients in the US

Picture of Ash Rishi

Ash Rishi

September 26, 2024

Snapshot

COUCH Health were commissioned by a leading biotech company to co‑create patient‑facing study materials for an upcoming phase 2/3 clinical study with people living with lung cancer within Black and African American communities in the US.

The client wanted to understand the perspectives of people with lung cancer who are currently underserved in clinical research to ensure their patient-facing study materials were appropriate and inclusive.

Problem

In the US, Black and African American people have been historically underrepresented in clinical research, despite being disproportionately affected by diseases such as cancer.

Lung cancer is the leading cause of cancer mortality in the US, accounting for 1 in 5 of all cancer deaths.

Black men are 12% more likely to develop lung cancer than White men.

While lung cancer rates are lower in Black and White women than in men, the gender gap is narrowing due to increasing incidence rates among women.

Strategy

COUCH Health proposed 2 strategies for gathering insights and feedback from individuals with lung cancer from black and African American communities in the US:

  • Co-creation workshops
  • Podcast interviews

Purpose

  • To understand lived experiences and views on clinical research
  • To gather feedback on patient-facing study materials for an upcoming lung cancer clinical study
  • To discuss effective strategies for sharing information about clinical studies to enhance diverse representation in lung cancer research among black and African American populations

Results

6 individuals participated – 5 people living with lung cancer and 1 care partner

  • 5 men
  • 4 women

To co-create the patient-facing materials, we gained insights on appropriate:

  • Language
  • Content
  • Imagery
  • Methods of sharing information

Based on the insights obtained, we co-created several patient-facing materials tailored to meet the needs of black and African American communities:

  • Brochure: Providing information on lung cancer clinical research as a care option
  • Digital ads: Deployed across social media and out-of-home advertising
  • Website: Providing access to information and personal stories about lung cancer
  • Posters: To disseminate in community spaces, such as places of worship, community centres, and barber shops, to raise awareness of clinical research opportunities
  • Podcasts: Hosted ‘Lung Cancer Conversations’ available across platforms including Spotify

Download the case study here >

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