Why is it important for researchers to hear about patients' perspectives?

Many researchers spend years studying the biology of diseases without ever meeting a patient whose life is impacted by the disease or their research. When it comes to improving the quality of healthcare provided, everyone from the research bench to the patient's bedside has a stake in the outcome. Patients' voices often never make it to the researchers who design studies aimed at improving the health conditions of these patients.

The Autoimmune Registry has been working with the University of Pittsburgh's Story Booth project to collect anonymous audio-recorded stories from autoimmune disease patients. One of the project's goals is to "inspire health researchers to focus on topics that matter to patients and to design studies where participation is a valued and meaningful experience." Patients are important stakeholders in the journey to better understand and treat medical conditions, especially when it comes to autoimmune diseases, where the current biomarkers don't necessarily correlate to the patient's experiences of chronic symptoms.

What do you wish a researcher knew about your autoimmune disease? Please contact us if you’re interested in participating in the Story Booth project as a patient, caretaker, or physician. You can also make your own social media post about your experience below.

The Autoimmune Registry will also be hosting a networking session for patients and organizations representing autoimmune disease in San Diego on September 21st, from 12:30 pm to 3:00 pm, at the Sheraton San Diego Hotel & Marina. If you are interested in joining, please RSVP here.