I’m proud to be a part of the 4th annual RA blog week. Today’s prompt: Research – Do you incorporate research into your disease management? If you do explain how and what difference it has made. If not discuss why not. Help us understand any barriers you have experienced to using research about Rheumatic Disease.
I’m the cofounder of the International Foundation for Autoimmune & Autoinflammatory Arthritis. We are a group founded by patients and use our voices to identify and solve the most pressing community problems affecting education, advocacy, and research. Our focus on research came about because we, as patients, felt that the patient’s role in the research process was too passive. Researchers work very hard to develop drugs that help people manage and cure illness, but often the symptoms they are targeting for improvement are not always the symptoms that patients feel most bogged down by. For example, drugs are developed to control pain or reduce swelling, but make us tired. When you are already struggling with fatigue as a part of your daily life, additional fatigue caused by medication can be BRUTAL. Wouldn’t it be amazing for researchers to actually hear what impacts patients the most. I recently had a reaction to my biologic drug injection. It wasn’t a severe reaction, but it causes an all over feelings of myalgia that when compounded with my regular pain. Sometimes….the treatment is more difficult to manage than the disease itself. We inject ourselves with these expensive drugs and pray for the best. The side effects can be frightening, but we pray the research has proven the drug safe enough to get us through another day.
IFAA has pushed for research in the areas of Early Detection and Diagnosis, Disease Management, Patient-Research Collaboration, Precision Medicine Preparation, and New Stakeholder Guidance. We at IFAA are patients and our voices drive what we do – not only as a story to enhance our work, but also as the reason why we choose our initiatives in the area of research. To learn more about what we do in the area of research, please visit https://www.aiarthritis.org/research. Join us as a part of our ACT II Hub that will be rolling out in the near future.
Research is necessary to help patients live their best lives. The inclusion of the patient voice in the research allows the process to be more authentic an reflective of the patient needs.
Check out other #RABlogWeek2018 blogs on research here: http://radiabetes.com/blog-week18/day4.html
Kelly. This is amazing i just read this blog int he diabetes space. The blog describes an FDA initiative to support patient research. I do not know if you know about it but if IFAA has interest in working on something I woudl be interested in helping out.
LikeLiked by 1 person
Tiffany has really been spear heading a lot of patient-centered research and a community approach. Our other cofounder also participates in PCORI. They are much more focused on the research component. I’m very proud of their work.
A research doesn’t in some way include the voice of the people living with the condition, how meaningful can it possibly be? Great work with IFAA!