Right to Repair - A Difference of Opinions on Who Should Adjust Your CPAP
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Right to Repair - A Difference of Opinions on Who Should Adjust Your CPAP
By Admin
With the development of sleep apps and easy-access web platforms for CPAP data, the question of who should adjust or titrate a device has become somewhat controversial. As patients become more knowledgeable about their devices, many feel that a doctor’s visit is not always necessary for adjustment or maintenance of the machines. At the same time, health professionals and device manufacturers point out that there are serious risks involved when a patient decides to change a setting or fix a problem on their own. There are strong opinions on both sides of this issue, but all agree that knowledge and experience are necessary to make informed decisions about how a device or component can best serve the patient. The laws may change in the years to come, either supporting or denying consumer rights to information about their products, but the question of who is qualified to make these adjustments is not easily answered.
What is Right to Repair?
The term Right to Repair is not only about repairing, but about the individual consumer’s right to know about the products they use. Legislation has been introduced in many states which may strengthen the consumer’s autonomy over the products and services they employ. While opinions vary as to the risks and benefits of repairing or adjusting some products, there is a considerable amount of support for increased access to information in general. In 2012, Right to Repair advocacy led to a law in the state of Massachusetts known as the Motor Vehicle Owners' Right to Repair Act, which required automobile manufacturers to provide the necessary information to allow anyone to repair their vehicles. The following year, the Digital Right to Repair Coalition (DRRC), later renamed The Repair Association (TRA), was formed to focus more on electronic devices. Since then, there has been a lot of attention given to medical equipment. While medical equipment maintenance issues can get complicated, CPAP users are more concerned with the technicalities of treatment itself, rather than maintenance or repair. But as patients who rely on the technology, they are part of the larger struggle to access restrained or proprietary information. Seeking follow-up care and ongoing maintenance for PAP therapy can be problematic in areas where resources are limited, and some patients feel that they have the right and the capability to learn how to adjust and maintain their devices for the best possible result. At the same time, it is strongly recommended by the most experienced CPAP users that seeking help from a professional first is always the best option. Right to Repair advocates stress the right of access to information, but they also urge that anyone interested in self titration or other device adjustments should do so with professional support. If you are making changes to your device, you can always bring it up to your doctor later, and later is much better than not at all. And if you are new to CPAP or unsure about what you are doing, you should not be making adjustments on your own, period. Modern CPAP devices are technologically advanced machines, and need to be used with caution, as each setting can potentially affect your treatment’s outcome.
New to CPAP? Let it Be
It should go without saying that new patients should not attempt to adjust therapy settings that have been set up by a doctor, sleep technician, or DME (Durable Medical Equipment) provider. Making these kinds of adjustments without knowing exactly what you are doing can have potentially damaging effects on your health and life. Once you become familiar with CPAP and do some research to learn about its health effects, you can learn how to safely make adjustments when it is necessary. But one should never begin therapy with the assumption that a professional’s oversight is not necessary. Not only do you need to understand how PAP therapy works, but you also need to assess your own health needs and how they may be impacted by therapy settings and routines.
Automatic Titration
Another option to consider is APAP or Auto-CPAP. These auto-titrating machines can sometimes be an easier solution for patients with varying pressure needs. Auto PAP machines will shift between pressures depending on breathing patterns, and successfully cuts out the need for an additional hand in the titration process. This doesn’t mean that pressure settings are completely automatic. You still have to set up the maximum and minimum pressures based on your individual breathing patterns, but the changes during therapy are very helpful, especially when apnea events begin to happen, as the APAP will increase pressure enough to neutralize the apnea then return to standard pressure levels until the next event occurs.
The Risks
An adjustment such as a pressure setting can seem deceptively simple, but there are risks beyond a less effective treatment. While studies in the past have found home titration methods to be adequate in comparison to titration studies in a laboratory setting, this doesn’t take into account the totality of a patient’s health conditions or comorbidities that may be affected by the settings. When doctors decide on a therapy setting, they consider the patient’s entire condition, not just the sleep apnea. High pressure, for example, can increase heart rates, which can be a serious problem for those with cardiovascular issues or hypertension. Even if a higher pressure setting improves the Apnea-Hypopnea Index (AHI) reading, it can also be causing heart problems, swallowed air, or excessive leaks. Examples like this show just how important it is to consider a patient’s entire condition and all possible outcomes when setting up a device for treatment. Another point that manufacturers often argue is that alterations or other maintenance beyond regular cleaning can be unsafe for consumers. For example, lithium-ion batteries are used as a power source for some machines, which can be dangerous if taken apart or assembled incorrectly. This is also why Right to Repair advocates demand that maintenance and repair information is made available for the products. Knowledge, they argue, is always better than a lack of information, especially in regard to safety precautions.
Accessing the Data
Many sleep apnea patients are aware of the controversies surrounding the SleepyHead application, which is no longer in development but still available in numerous forms due to its popularity. At the time of SleepyHead’s release in 2011, there were fewer options for patients wanting to access and understand their therapy data. Information was stored in SD cards and delivered to a doctor for analysis. The SleepyHead app allowed people to access that software directly in a clear format that was easy to use, but there were warnings from doctors who worried that patients may actually make their apnea condition worse with the wrong adjustments. Today there are numerous options for immediate access to therapy data and other self-monitoring information via bluetooth or wireless capabilities built into the devices. So information has become more accessible simply because the technology has allowed it to be. And unlike SleepyHead, these new applications are FDA-approved for patient use. But the debate is far from over. What you decide to do with your therapy information, as well as your knowledge of the device you have purchased, is a personal choice and a right as a citizen, but it can also be a dangerous choice if made incautiously.
Your Decision
There are potential risks and benefits to many decisions in life, but a treatment decision should be made with your health goals in mind. Regular physical examinations and thorough sleep data analysis should give you an idea of what health concerns you have, and what goals you should set for the future. The key to effective treatment, whether self-regulated or supported through follow-up care by a medical professional, is knowledge. Any decision that will affect a life-threatening disorder should be an informed decision. This is a point of agreement between both sides of the Right to Repair debate, and it remains a top concern for both doctors and patients. If granted the right to repair, adjust, or modify the technology you use to treat your disorder, do so responsibly.
Sources
24x7mag - http://www.24x7mag.com/2016/03/revisiting-right-to-repair/
Association for the Advancement of Medical Instrumentation - https://www.aami.org/newsviews/newsdetail.aspx?ItemNumber=4795
Gizmodo - https://gizmodo.com/right-to-repair-is-less-complicated-and-more-important-1834672055
Psychology Today - https://www.psychologytoday.com/us/blogb/sleep-newzzz/201905/why-hacking-your-cpap-is-not-good-idea
The Repair Association - https://repair.org/
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