Now, more than ever, we need you to become involved with research about your disease. Without the participation of patients and parents, research cannot advance toward a cure.
Specifically, in Juvenile Arthritis (JA), parents and patients play a critical role in research – you are experts when it comes to the issues that are important to you or your child’s health and daily quality of life.
What role can you play in research to find a cure?
At one time, the only role that patients played in research was being a subject. While that important role still exists, researchers are now asking that patients become research partners.
What does that mean? It means you and/or your child actually become full members of research study teams providing researchers much needed perspective and ideas about research topics and study design. For example, a parent research partner may help draft the materials used to recruit families to participate in a study, because a parent knows first-hand what would make a study feel worthwhile and attractive. Most importantly you are the only one who can tell researchers the things in day-to-day life that are important to you and/or your child.
Why should I become a research partner or a research participant? And what’s the difference?
You are the expert when it comes to the issues that are important to your child’s health and daily quality of life. You can help researchers prioritize which studies should be conducted and help them to ask and answer the right questions. Your input is sought and respected by researchers.
Becoming a research participant or “subject” is different than being a partner in research, but both are very important. By being a study participant, you can positively impact your health (or the health of your child) and the care you receive. Evidence is available that shows that patients who take part in research receive better care for their condition because of their involvement.
How do I learn more?
Thanks to a two-year Patient Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award, the Arthritis Foundation has created a series of educational videos to help make patients and families aware of the opportunities available through involvement in research, whether as patient participants or as patient/family partners. The curriculum was developed with clinicians, researchers, patient/families and presented during the parent program sessions at both JA Conference locations in 2016 and 2017 and was refined after each presentation based on attendee feedback. The PCORI award enabled additional travel scholarships for 56 eligible families to attend the 2016 and 2017 JA conferences and participate in the research session, “Research: There’s a Role For You!” where the training was presented. As a final product, we developed a video based on the co-produced curriculum that can now be disseminated more widely to educate and empower patients/families to become involved in research.
The training, designed to answer your questions about taking part in research, can be viewed here (to be viewed in order):
- Introduction – Living With Chronic Disease: An overview of research projects with patient partners.
- Chapter 1 – Research as a Tool: Learn about the importance of patients/subjects, research partners and patient reported outcomes. Find out why patients should get involved in different parts of the research process.
- Chapter 2 – Joining Research as a Study Participant: Find out more about the different types of research, the rules that protect you as a subject, and the benefits of volunteering in a study.
- Chapter 3 – Joining Research as a Patient or Parent Partner: Learn how to be part of a “team research”, what it means for patients and how to get involved.
We hope you get involved after watching our videos! To find out more:
- Sign up to become a member of PARTNERS, our patient-powered research networks, to become a research partner and for more information on JA-focused research.
- Check out research opportunities on the Arthritis Foundation and Childhood Arthritis and Rheumatology Research Alliance (CARRA) websites.
- Ask your doctor and/or care team about research studies you may be able to take part in.