Finding good, easily understandable information about medical conditions and treatment options can be a bit of a challenge for patients, whether they’re a self-pay patient or not. But having access to good information is especially important for self-pay patients who don’t have health insurance to pick up the cost of a procedure or treatment that may or may not be necessary, or may not be the most cost-effective way of dealing with an issue.
Stepping up to provide this information is what looks to be a new web site, Medulous. Here’s how the site describes itself:
Medulous is an online community of patients, doctors and health professionals sharing their health experiences. The MeduMatrix system rates the efficacy of treatments for medical conditions based on real ratings provided by the community and provides alternative treatment options. Through real user reviews and the MeduMatrix rating system, patients avoid unnecessary treatments and make informed health decisions.
The site appears to get a lot (perhaps even all) of its information about different medical conditions from Medline Plus, an online service of the National Institutes of Health. Where the real added value of Medulous comes from is the commentary and reviews of each treatment option provided by both medical professionals and patients who have received that treatment.
I thought I’d check out the information for a condition and treatments I knew a little about, so I went to the site’s area for sleep apnea, which was what I was diagnosed with this spring and had surgery for this summer. I thought the information provided was a good overview of the condition and easy to understand:
Sleep apnea is a common disorder that causes your breathing to stop or get very shallow. Breathing pauses can last from a few seconds to minutes. They may occur 30 times or more an hour.
The most common type is obstructive sleep apnea. It causes your airway to collapse or become blocked during sleep. Normal breathing starts again with a snort or choking sound. People with sleep apnea often snore loudly. However, not everyone who snores has sleep apnea.
You are more at risk for sleep apnea if you are overweight, male, or have a family history or small airways. Children with enlarged tonsils may also get it.
Doctors diagnose sleep apnea based on medical and family histories, a physical exam, and sleep study results.
When your sleep is interrupted throughout the night, you can be drowsy during the day. People with sleep apnea are at higher risk for car crashes, work-related accidents, and other medical problems. If you have it, it is important to get treatment. Lifestyle changes, mouthpieces, surgery, and breathing devices can treat sleep apnea in many people.
When it came to listing and describing treatments, there were only three options given, though: oral appliance, pillows, and surgery. Missing from the list is use of a machine to deliver continuous positive airway pressure (called a CPAP machine), which is a common treatment for sleep apnea. It’s basically a mask that slightly increases air pressure while a person sleeps, ensuring they get all the air they need.
The way the site is built, it looks like it depends on patients and doctors to come to the site and ‘create’ new treatments for each condition. So it would presumably be easy enough for a CPAP user to add that treatment to the list of options for dealing with sleep apnea.
Two of the three treatments listed, oral appliance and surgery, each had a single review from patients, none for providers. The reviews would be helpful to most people I think, although it will be more helpful when they have more people adding their experiences as well. I did my part though, adding my own comments on both treatments that I’ve experienced, the oral appliance and surgery.
I also went over to check out what they have on migraines, which my wife suffers from. Here they have some work to do – when I typed ‘migraines’ into the search box it provided a brief 1-sentence description of the condition, but then says there are no treatments available. Type in the singular ‘migraine’ and they provide a good deal more information, as well as several treatments. Here again though the treatments are missing a few I know about, including Botox.
The site looks to be fairly new, according to their Twitter feed (@MedulousReviews) they launched on May 17 of this year. So it’s likely that as it grows and becomes more widely known, many more patients will help to fill out the rest of the treatment options for a wide range of conditions, making the site an even more valuable resource to self-pay patients and others wanting to find out what the experience of other patients has been with treatments they are considering, and also to find out if there are alternatives. Self-pay patients should definitely bookmark this site for future reference.