Snapshot

COUCH Health were commissioned by a pharmaceutical company to host two online patient council sessions in collaboration with Parkinson’s Foundation and Parkinson’s UK.

These sessions involved individuals with Parkinson’s and their caregivers from diverse ethnic backgrounds, aiming to gather insights to influence the study design and the support offered to patients in an upcoming phase 2 clinical trial.

Problem

Clinical research is often designed without considering the needs or lived experiences of people from diverse ethnic backgrounds.

Consequently, people from diverse ethnic communities are underrepresented in Parkinson’s clinical trials – leading to gaps in understanding how certain treatments may impact individuals within these communities.

Only 17% of US Parkinson’s clinical trials between 1985–2007 reported racial and ethnic demographics

Of these, only 6% of participants were from diverse ethnic backgrounds – despite making up 20% of the general population

Strategy

COUCH Health engaged with individuals with Parkinson’s and their caregivers from diverse ethnic backgrounds in the US and UK.

Two patient councils were held with the aim to:

• Understand patient and care partner perspectives
• Obtain feedback on key requirements of the phase 2 clinical study
• Identify study support that could improve recruitment, retention, and the participant experience

Key recommendations based on the insights gathered in the two patient council sessions were used to inform the design of the upcoming phase 2 clinical trial, including how participants and their care partners can be supported when participating in the trial.

Results

9 individuals participated – 7 individuals with Parkinson’s and 2 care partners

• 5 men
• 4 women

Ethnicity

• 2 African American
• 1 Hispanic
• 2 Indian
• 3 Pakistani
• 1 West Indian

Country of residence

• 5 UK
• 4 USA

Participants were at varying stages of their diagnosis, including newly diagnosed, receiving a diagnosis at ages 20–30s, and ages 50–60s

100% of individuals who provided feedback were extremely satisfied with the patient councils

Based on the insights gathered, COUCH Health provided recommendations on key themes:

• Culturally appropriate education
• Accessibility considerations
• Emotional support measures
• Methods for building trust
• Ensuring a diverse clinical team who are educated in diversity, equity, and inclusion (DEI)

These insights and recommendations informed the design of the upcoming phase 2 clinical trial and the participant support provided.

Download the case study here >