In laboratories, clinics, and rehabilitation hospitals across the country, scientists and practitioners are conducting research and development that will have an impact on you, your family, or someone you know. Somewhere a rehabilitation researcher is developing an intervention which may help a person with a disability walk farther without pain or grasp an object without tremors. In an engineering lab, a team is testing a prototype prosthetic that can sense potential pressure injuries. Elsewhere, a psychologist is analyzing survey data to understand how people with lived experience in psychiatric disability find and keep competitive, meaningful work in their communities. Those projects have something in common: people with disabilities participating in research.
Why should you participate in research?
As a person with a disability, there are many reasons you might want to participate in a research study. You might benefit from an intervention or technology that improves your ability to live, work, and play in your community. You might have a professional or personal interest in the topic of the study. You might be interested in doing your part to ensure that researchers have data about the diversity of experience, including differences in lifestyle, biology, and environment, so that new interventions and technologies can benefit a wide array of potential users.
How can you participate in research?
Levels of participation can range from taking 5 minutes to complete an anonymous survey all the way to joining a research team:
- Surveys and questionnaires are tools researchers use to collect data. Many surveys are anonymous. Surveys may ask about opinions or experiences, and will often collect demographic information such as age, education levels, race or ethnicity, types of disability, and so on. If you fill out a survey, you may find different types of questions like yes/no questions, rating items on a scale (i.e. 1 to 5, never to always), or longer written responses. Some researchers use questionnaires to measure a person’s quality of life, activity, or ability levels as part of a larger study.
- Interviews and focus groups help researchers collect more information from participants about their experiences and opinions on different topics. Interviews are often one-on-one between an individual and a researcher and may be conducted face to face or remotely. Focus groups include several people brought together, either physically or virtually, to share their views and experiences on a topic. A researcher may lead discussions and ask question of the group. Here’s an example of a focus group study with law enforcement personnel about their experience in serving people with disabilities.
- Clinical trials involve testing a product or intervention to see if it is safe and effective. There are different types of clinical trials, including randomized controlled trials in which participants are divided into groups where some receive a treatment and others do not, so researchers can compare the results.
- Technology such as apps and assistive devices may go through beta testing or product testing with potential users. Participants in beta or product testing may receive early access to a product to use it “in real life.” Testers may find issues that didn’t come up in earlier laboratory testing. Beta testers with disabilities can provide feedback on the usability and accessibility of a product, identifying issues that a user without a disability might not encounter. They may also provide feedback on how a product can be improved in general before it goes to the marketplace.
- Some research centers have consumer advisory boards to support their research efforts. These boards meet on a regular basis to review the center’s research program, advise on issues and concerns from the community, and act as a bridge between researchers and the people who will feel the impact of research and development activities. Consumer boards may include people with diverse abilities and backgrounds. The NIDILRR-funded Spaulding New England Regional Spinal Cord Injury Center has a consumer advisory board, a diverse group including people living with SCI, family members, advocates, and clinicians, which helps guide the center’s work.
- Participatory action research is the “all in” of getting involved in research and development. Participatory action research teams include individuals with lived experience in disability, independent living, and rehabilitation – they may help design the project, they may be part of the data gathering or development teams, they may be the ones conducting interviews or focus groups. Having people with disabilities as part of the research team can be challenging but also rewarding for the whole project team, as participants gain research skills and the project benefits from direct input of the community it will impact. Cognitopia, developers of NIDILRR-funded technology supporting people with cognitive disabilities, uses a participatory research design in its development effort and shares some of the challenges and rewards.
What can you get out participating in research?
Participating in research and development can have benefits and drawbacks for those who join in. Participants may receive compensation for their time, sometimes in the form of gift cards or cash payments. Beta testers get early access to some of the latest technology and may be able to keep the products they test. Participants in clinical trials receive early access to new interventions which may improve their quality of life. Among the drawbacks: Participating in research takes time, whether you’re filling out a five-minute survey, visiting a clinic, or meeting with a focus group. You may need to travel to participate in the study. Finally, an intervention or a product may not work for you.
Are you ready to join in?
There are many places you can find studies, trials, and survey opportunities you can join. Read through the study description, including eligibility criteria and any risks or expectations, before you sign up.
- Our News and Notes from the NIDILRR Community and Beyond features opportunities to participate in NIDILRR-funded studies. Each announcement includes what the study is about, eligibility and compensation details, and links to learn more. Subscribe to our weekly newsletter.
- Clinicaltrials.gov is a central resource for trials across the US and abroad. The database is searchable by condition, country, recruiting status, and other criteria. SCItrials.org lists spinal cord injury clinical trials the US and Canada.
- Rehabilitation centers and university hospitals may have a section of their website dedicated to opportunities to participate. For example, the Kessler Foundation (home to several NIDILRR-funded studies) has a page for 10 different study areas.
- Learn about the All of Us Research Program at the National Institutes of Health, “a historic effort to gather data from one million or more people living in the United States to accelerate research and improve health. By taking into account individual differences in lifestyle, environment, and biology, researchers will uncover paths toward delivering precision medicine.”
- Disability-specific and professional organizations often publish calls to participate in their newsletters and social media feeds.
If the opportunity to participate in a survey, study, or trial comes your way, we hope you’ll seriously consider joining in. Research and development are happening all around, and your participation today may help bring new products, therapies, and interventions to your community in the future.