Reason why patients with sleep apnea syndrome say they are 'alive' by hacking medical devices

by Larry & Teddy Page

Sleep apnea syndrome is a disease that causes respiratory arrest or hypopnea during sleep, and it is said that risk of heart attack, cerebral infarction, diabetes, heart failure, arrhythmias, obesity, and traffic accidents will increase unless treatment is done. The patients are hacking a respirator called CPAP and have the movement to adjust medical equipment themselves, the news media Motherboard follows the pitfalls of medical care and the appearance of the patients talking that they are "alive" by hacking It is.

Why Sleep Apnea Patients Rely on a CPAP Machine Hacker
https://motherboard.vice.com/en_us/article/xwjd4w/im-possibly-alive-because-it-exists-why-sleep-apnea-patients-rely-on-a-cpap-machine-hacker

Patients with sleep apnea syndrome have an image of "fat men", but the actual patient is not limited to such a person. Christian Lin, a 62-year-old woman living in Arizona, thought that he could not get tired everyday, was one who was told by the doctor that he was suspected of having sleep apnea syndrome.

There are several types of sleep apnea syndrome, but the type that Mr. Lynn was diagnosed was one that was difficult to treat. Mr. Lin said that the doctor handed out a device called CPAP that sent pressurized air from the nose after diagnosis.

Although the total number of apneas and hypopnea per hour of sleep is called AHI, Lin 's AHI did not improve even after half a year using CPAP. "No doctor was able to lower my AHI, and to be honest, everyone seemed not to be particularly interested in my AHI," Mr. Lin looks back on then.

In order to improve the situation somehow, Mr. Lynn conducts Google search and encounters a forum "CPAPtalk.com" for sleep apnea syndrome. And it was an open source software called "SleepyHead" that was a big topic in this forum.

by Philips Communications

SleepyHead was developed by Australian developer Marc Watkins, a software not approved by the US Food and Drug Administration (FDA). This software, made by hundreds of thousands of hours of hacking, allows patients to access data on CPAP devices that are not normally accessible. Data gathered by the CPAP software can basically be accessed only by authorized persons such as doctors and patients can not purchase or download software. Mr. Lin said, "I can not explain exactly how CPAP experience has changed by this software, but it is not as good as day and night, it is thanks to this software that I am alive now." I will.

CPAP equipment collects various data such as average air pressure, AHI, mask leak rate. Many of these data are recorded on the SD card so that the patient brings this data to the doctor once every six months or sends it to the doctor using the application. Originally this kind of data is used for adjusting the air pressure of CPAP according to each patient etc, but most doctors just check the numerical value and just send the numbers to the equipment. In the 2015 study that experts of sleep is insufficient status quo has been pointed out, the problem that patients receive the personal care that you take advantage of the data is not very few has become a float Boli.

by rawpixel

However, it is dangerous for patients to directly manipulate CPAP, according to sleep physiologist Thomas Penzel. The adjustment of equipment is "There is a danger of death if you make a mistake, CPAP is not a toy, it's medical," Penzel said. On the other hand, Mr. Penzel also acknowledged that there is a situation that doctors are not crawling with patients with sleep apnea syndrome, and doctors do not read patient data for treatment because of insurance, We are using CPAP properly "It is said that the purpose is to confirm that.

At CPAPtalk.com and ApneaBoard.com, SleepyHead, which decodes CPAP device data and makes it accessible to general patients, is a central topic. Normally CPAP data is only to be read by dedicated software, but Watkins is cracking the data of the equipment. Watkins said that the process of hacking the format of the file is very complicated as the data format is being tamperproofed.

Mr. Watkins started the SleepyHead project seven years ago when I was interested in the "forbidden secrets" held by the SD card of my CPAP device. "Over time, I have been increasingly disliked by the CPAP industry, which exploits and uses people. For patients, we need a data-oriented, all-in-one CPAP analysis tool that can be used free of charge It was obvious, "Watkins said.

In this way, it is not the first time for a DIY movement to occur in medical devices. Activist Hugo Campos has done activities to access his own pacemaker's data.

Fighting for the Right to Open his Heart Data: Hugo Campos at TEDxCambridge 2011 - YouTube


And with the efforts of Mr. Campos and others, in 2015 the exception of the Digital Millennium Copyright Act (DRM) was granted, and for security research patients were allowed to hack medical equipment and access the data It was. For this reason, Watkins and others' actions to hack medical equipment are completely legal. However, because hacking is legal, medical device manufacturers are not welcoming it. According to Watkins, it may take hundreds of hours to hack the data format of the new device. And when Mr. Watsons sends an email to a medical device manufacturer, most manufacturers ignore the mail and sometimes show discomfort.

Mr. Watkins who hacks every time new equipment appears can do the project alone or with someone else. Watkins who is concentrating on the project now with support of his wife is improving the symptoms of sleep apnea syndrome now and searching for jobs other than father work even though the child has grown up It seems that it is coming to a stage. Mr. Watkins says, "I want to make a CPAP device that can be modified one day DRM free," but as soon as I work as a developer, I have no choice but to suspend the SleepyHead project.

In sleep apnea syndrome, doctors are enthusiastic about money moving activities such as selling equipment, but they do not spend time or money to solve the doubts and problems of CPAP users. In such circumstances, the Apnea Board Forum has set the goal of "power to patients", and indeed, it is the base for information and learning of patients. In the Apnea Board Forum, manuals made for physicians are now available for download, so if you read the manual you can adjust CPAP to fit your body.

by Kinga Cichewicz

Some people who have sleep apnea syndrome say that "The idea that" changing your treatment on your own is dangerous "is for doctors and manufacturers to plant fear in patients" about. Many who hold such ideas say that they will adjust the equipment after fully understanding the mechanism of the equipment.

Mr. Lin, who was suffering from sleep apnea syndrome, was able to completely change the treatment by combining this manual and SleepyHead. "The doctor will look at the average data over the past 6 months but will not see what kind of problems are going on by drilling down individual nights.I check SleepyHead every day and set the equipment "I am feeling better than I first diagnosed, so I can sleep well and I have energy." "I am a 62-year-old self-employed person and I have a financial margin Because there is no health insurance, there is no health insurance.If you do not have this software you will be at a loss, "Lin said.