Neurodiversity: Why it's important to consider in clinical research

1. Purpose

We wanted to carry out a research project to understand more about the barriers neurodivergent people experience when trying to access healthcare services and clinical research, and to raise awareness of the ways these barriers could be overcome.

2. Research

So, we conducted a research project with 199 people who were either neurodivergent themselves or a caregiver for a neurodivergent person. We asked them about their thoughts, opinions, and experiences relating to healthcare services. The following co-created activities took place:

Interviews
Focus
Surveys

Who took part

86.4 Neurodivergent people

13.6% Caregivers of a neurodivergent person

3. Findings

Barriers to partaking in clinical research

CREATING ADDITIONAL BURDEN

Neurodivergent people already experience challenges with their career, education and relationships. Clinical research participation would add to this burden.

CHALLENGES IN ARTICULATING THOUGHTS

In pressured environments, participants said they would say anything to get out of the room, potentially impacting their ability to give consent to take part in clinical research.

SENSORY OVERLOAD

Bright lights, loud sounds, and busy waiting areas.

SERVICE-BASED TRAUMA

Negative experiences accessing healthcare services, creating lack of trust in the industry and potentially clinical research.

DIFFICULTY PROCESSING OR REMEMBERING INFORMATION

Difficulty in processing complex information, and keeping on top of appointments and remembering to take medication regualarly.

Despite the barriers, 61% of participants had considered participating in clinical research

Actions the clinical research industry can take:

Before clinical research begins

70% of participants said information should be made easier to understand.

32% of participants recommended using videos and infographics.

29% of participants said to break up any large chunks of text.

22% of participants suggested to provide assistance with understanding research information.

During clinical research

70% of participants would want medication and appointment reminders.

32% of participants said that appointment flexibility was important.

29% of participants would prefer to keep a digital diary.

22% of participants said they would want all staff to be informed on neurodiversity.

After clinical research

92% of participants would want to know the outcomes of the clinical research.

Thank you!

We would like to thank all participants for taking part in this research, and for sharing their valuable insights on how to access healthcare services and clinical research could be improved for neurodivergent people.