Sleep apnea care isn’t tailored for patients. Or at least not tailored enough.
That’s why researchers at MyApnea.Org want to hear from you. They want to learn more about your experiences getting diagnosed and treated so that sleep apnea care reflects your priorities and your needs.
Dr. Susan Redline (principal scientist for MyApnea.Org and sleep researcher at Harvard Medical School and Brigham and Women’s Hospital), just received a small grant for a research study to talk to patients about these important issues. The study will adopt a marketing research tool called ‘voice of the customer’. ‘Voice of the customer’ is a way to capture people’s views about a product and use the feedback to make the product more useful and appealing. In this project, the customer is sleep apnea patients, and the product we want to improve is your care.
How will the study work?
Step 1: Create a collaborative working group of 2 patients and 2 researchers to conduct the study. It is important that scientists work with patients on research so that the right questions are asked in the right way.
Step 2: Recruit sleep apnea patients from around the country (that’s you!) to participate in 1:1 interviews with trained staff researchers.
Step 3: Analyze the data. If you are interested in methods of scientific analysis, check out this article that we are modelling this work after.
Step 4: Share results with researchers, clinicians and patients on MyApnea.Org and beyond. We will use these results to inform a bigger project that further explores patient preferences and needs.
...Shape the future of sleep apnea care!
What to know if you are interested in participating:
You must be an adult (18+ years old) with diagnosed sleep apnea
You will be asked to participate in 1 interview
You will be compensated with a gift card
We will begin recruiting this winter. Check back in soon! If you have questions/ comments, leave them below!
The only way to get the help we need is if we are part of the plan. Doctors, researchers, clinicians and other patients need to hear what we need. We need to let them know how we are affected by sleep apnea, what works and does not work, what problems we have with machines, appliances, insurance issues and finding good doctors--just to name a few things. There are all sorts of medical issues out there. The ones that know the most about it is the patient. Patients should be the driving force behind finding treatments, medicines, cures! The working relationship in most cases is the doctor having 95% of the input and the patient 5%. This isn't true in all cases and may be an exaggeration but for so many of us, we still feel the doctor knows best. In regards to treatment, that may be true. But all treatments and information should be founded by the input of the patient.
So this is a great opportunity for us to take some control of our health. We have the chance to help "shape the future of sleep apnea care!"