Neurodivergent and Participating in a Clinical Trial? These Tips Can Help.
By: Heidi Green, COUCH Health
Navigating the medical system as a neurodivergent person can sometimes be difficult. Many spaces and interactions aren’t as accommodating as they could be — and the same can be said of the clinical research space. However, there are ways to make trial participation less stressful.
Ask For Accommodations
One of the most effective things you can do to make your clinical trial experience work better for you is to ask for what you need. Here is a sample list of the kinds of accommodations that your clinical research team should be able to provide you with. Feel free to share this with them, or customize it to meet your individual needs.
Examples of What to Ask For
- Lighting: You can ask for the lights to be dimmed, or permission to sit in another room if the overhead lighting is too bright.
- Sound: Request noise-cancelling headphones, or permission to sit in a quiet space if the room is too busy or noisy. You may not be able to wear headphones during certain parts of the trial, but you likely can when in a waiting room.
- Appointment times: Let the research team know if you prefer multiple methods of appointment tracking to help with time blindness, energy management, and organization. For example, you could request written notes listing out all appointment times as well as reminders via email and text.
- Task management: Ask to be given one task or project at a time — such as one survey to complete then the next one rather than receiving a pile of papers to complete all at once. You may also request a guide or assistant to help you go through the documentation if you’d like.
- Breaks: Talk to your trial team about building breaks into long appointment days, such as those that include multiple clinic assessments on the same day.
- Communication: Let your support team know up front that you prefer transparent communication about what, when, and why things will happen throughout the trial, including what the outcome measurement process will entail (e.g., appointment 1, time, date, what’s included). You can ask for written communication to back up verbal communication to support processing, information retention, and understanding.
- Touch: If you struggle with touch, letting the trial team know ahead of time is important. You may also want to let them know if you have an aversion to needles, and that there is evidence to suggest neurodivergent people experience pain differently. Ask for the ability to lay down if you have a concern about fainting.
- Clutter: You can request minimal unnecessary visual clutter in the spaces where you will spend time (e.g., lots of colorful posters in the clinic may overwhelm you).
- Travel support: Inquire about organization support for any travel to and from the clinical trial site.
More Neurodiverse Research Starts with You
Keeping research teams accountable and ensuring that gatekeeping and implicit bias don’t exclude patients who should be included is essential to an improved research landscape. While such barriers have certainly posed a challenge to participation in the past, now is the time to change that.
