Why should you participate in research?
- Empower yourself and cultivate awareness!
- It’s an opportunity to share your unique perspective.
- Researchers and people who don’t have lived experience can’t understand the nuances of living with x condition. Incorporating lived experience into project design, implementation, and dissemination leads to more relevant topics, intervention design that works for participants, and better dissemination to the people who are actually living with the condition.
- Many health care providers are making a positive shift toward ‘evidence based care’, which means that what they practice needs to be validated by research. Participating in this process means that standards of evidence-based care align with what patients actually want and need.
- Learn more about your condition.
- Research can provide concrete data that leads to stronger, more sustained funding.
What is participating in a research study really like?
Not all research studies are the same – they are designed based on the research question and how much is known about the research topic. Regardless of the study, you always have rights, which are outlined in an informed consent form. Click here for a resource that breaks down what “informed consent” means, both in clinical care and in research.
When people think about health research, many people think about “clinical trials” in which researchers compare two types of treatments to determine if one is better than the other. Click here for a resource from the National Institutes of Health that talks about what this could look like for you.
I have participated in a few different research studies since being diagnosed with Juvenile Idiopathic Arthritis at the age of 10. The first studies that I did were surveys that I completed in my rheumatologists office. I do not remember much about them, but I do remember a researcher coming in before or after my appointment and explaining the research project and what they were asking me to do.
More recently I have been involved with a study conducted by OMERACT (Outcome Measures in Rheumatology) looking at side effects of rheumatologic drugs and how those side effects can be measured. Before the study began, I met with the primary investigator (PI) for 20 minutes on a video call to tell them about the different medications I have been on and the side effects that I have had. Once I was accepted into the study, I was asked to fill out a consent form before joining a group meeting with the PI and other patients. This meeting lasted 90 minutes and focused on 1) which side effects we would like to be made aware of before starting a medication and 2) how those side effects could be measured. At this meeting, we were informed that a few of us would be selected to have one-on-one conversations with the PI again. I was selected for one of these interviews and met with the PI for an additional 90 minutes. During this final meeting, we reviewed a long list of side effects to evaluate whether I understood what they were and if I thought specific side effects should either be changed or taken off of the list.
This was by far the most time consuming study that I have been a participant in, but it was nice to see that my voice was valued and that they were able to include young adults in a field of research that usually centers around older individuals.
Kaye, YP AREA Patient Partner
Where do patients find research studies?
Savvy Cooperative empowers people to use their patient experiences to improve health innovations. Savvy provides vetted research opportunities to patients while ensuring companies “ask patients”
Rare Patient Voice empowers patients and caregivers to share their voices with researchers and companies developing products, devices, and treatments to improve lives.
Health Union is the only digital health company continuously working to bring people together to create meaningful health connections and authentic social interactions.
ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world.
Ask your doctor’s office!
