On the MyApnea staff team working to improve the lives of sleep apnea patients
Boston, MA, USA
The research solicitation was removed and I want to explain why. MyApnea is committed to being a trustworthy, friendly space for people with sleep apnea. We work hard to want to make sure that the forum is run by YOU, the patients, not solicitations or even spam. Otherwise, there might quickly be an imbalance of content and dilute the great conversations that currently go on here among patients and stakeholders. We also want to make sure MyApnea members aren't vulnerable to phishing type attacks and giving their emails to bad actors.
With that said, we hope that MyApnea can also be a vehicle to advance our collective knowledge and understanding of sleep apnea through research.
Even though we don't have researchers post on the forum, we are happy to work with legitimate groups to share opportunities for research on the blog (announcements category). This way we can filter some of the noise that comes through the forum, but still make sure we are telling the MyApnea community about legitimate and exciting research opportunities going on!
Let me know if you have any questions or comments.
Thanks as always for your engagement, excitement, and mutual-generosity!
hahaha I'm loving the wordplay. Those are some good ideas. I'm adding your points about more detailed introductory information and "additional information" tags to the list of items for our team to consider.
Thanks again for your thoughtful ideas, your engagement on the forum, and your contribution to the research!
So glad! Thank you for your feedback and for completing the surveys!
Adding to SusanR's….. We really appreciate getting feedback from people who complete the surveys. Our research team worked with patients when we designed the surveys, but there are always confusing bits or "logic" that we don't catch, so hearing from you all is priceless! It’s also true that any survey is limited in what it captures and how it captures it. It's almost impossible to design a survey where no one will take issue with at least one question, or the answer options available. But with that said, we can always improve and are determined to do so.
I reviewed the snoring question: “Over the past 4 weeks, how often have you snored?” There are other similar questions “Over the past 4 weeks, how often do you have times when you stop breathing during your sleep?” and “Do you ever experience a desire to move your legs because of discomfort or disagreeable sensations in your legs?”
These types of questions help indicate whether people are symptomatic, regardless of diagnosis/treatment status. I can see how these would be confusing to answer if you are already diagnosed and treated… or if you are newly diagnosed and your symptoms have changed very recently. Our team is going to look through the questions again and consider some changes. Let us know if you have any further thoughts on the matter.
I will also add that it’s extra challenging to fill out a survey when you can’t ask a staff member clarifying questions in person. For example, I’ve found that when we do research in person in the community, we are most successful when participants complete surveys with a staff member, one on one, in a private room-- something that is clearly not relevant to the online research model! Do you have any ideas for how to bridge this gap (other than sharing feedback through the forum)?
Thanks again for posting. We'll be sure to post on the forum the next time we make any changes to the surveys. In the meantime, thank you for filling out the surveys. Even though the surveys aren't perfect, your willingness to participate is enormously valuable and do help researchers advance knowledge about how sleep apnea impacts the lives of patients and how we can improve care. As an FYI we are starting to look at initial findings from the survey data and look forward to sharing the results with MyApnea this spring!
Keep in touch....
Since you are interested in quality of life, I wanted to let you know that when you complete the MyApnea research surveys, you get a report that shows how you scored on some quality of life outcomes like insomnia, sleepiness, depression, and daily functioning. Most of the scores are from validated screening questionnaires that your doctor or medical researchers might use. Given your questions, I thought you might be interested in this resource.
Best of luck!
Ruby, I like your point that the bigger issue is lack of information and education to start with. Somewhat related to this SleepyHead conversation, I heard a report about CPAP, data sharing, and insurance on the radio last night; they were interviewing the author of this article: https://www.propublica.org/article/you-snooze-you-lose-insurers-make-the-old-adage-literally-true
Do the story resonate?
Thank you all for sharing the fascinating article and comments. Sierra, I was struck by your statement "I certainly would not buy a CPAP machine that is not supported by SleepyHead. For that reason I suspect that CPAP manufacturers are not really as displeased with the existence of SleepyHead as they might say publicly."
This really goes against the more common attitudes. I'd love to hear more of your thoughts on this, Sierra, and what others think.
The surveys are live again!
First- sorry for my delayed reply!!! And thank you for all the great comments and stories.
It sounds like the impact of sleep apnea on work has varied widely but has often impacted important quality of life issues- ranging from not being able to concentrate on the newspaper, to being in a serious accident (wiredgeorge-- so glad you are okay).
I found it interesting that several of you mentioned that treatment can have varying affects. It can be a life changer, make a small but noticeable difference, or take months to make an impact if at all.
On that note, recently, MyApnea researchers have been investigating trends in the MyApnea survey data on that topic: sleep apnea patients who use their CPAP machines and still feel sleepy. I wonder how common this concern is for the MyApnea community and for sleep apnea patients broadly...
Hello MyApnea Community!
The MyApnea surveys are temporarily unavailable due to some technical updates we are conducting. If you visited the surveys in the last few days and could not complete them, please check-in again soon! We will notify you when they are up and running again.
To everyone who has already completed the core surveys – thank you. Your contribution helps researchers better understand how sleep apnea and other sleep issues impact people’s daily lives, and that can contribute to better patient care in the future.
We’ll keep you updated as to when the surveys will be live and available again.