For 31 years, the Associated Professional Sleep Societies has hosted a conference called SLEEP. SLEEP 2017 was held in Boston this spring and featured five packed days of presentations on the latest developments in sleep medicine. Thousands of clinicians and scientists attended. This year, a group of patient leaders from MyApnea.Org attended and led a new, exciting, and much needed discussion about the role of patients as partners in advancing sleep health.
Reflecting a core value of MyApnea.Org, the patient-leaders believe that sleep medicine can be improved by working with health care providers and researchers. To this end, the patients led a conversation about pressing concerns facing sleep patients and clinicians. What transpired was an honest and dynamic discussion about challenges and potential solutions in sleep apnea treatment and care.
In the US, getting diagnosed with sleep apnea is a complicated process that often leads to frustration for both patients and providers. After sharing their experiences, many patients and providers shared a revelation: they are on the same team! They experience similar frustrations and all want a better system, better care, and better health outcomes.
Patients were surprised that many of the shortcomings in sleep care that they experience are due to problems that doctors understand but have little control over. Many doctors described the frustrating systemic pressures that get in the way of their ability to give the highest quality care. One MD in a rural setting shared her struggle to keep her practice afloat due to expensive and everchanging insurance guidelines. Many MDs lamented the hurdles they must jump through to get approval from insurance companies to conduct sleep studies. They often cannot prescribe the equipment they feel is best for a patient and sometimes are not even authorized to interpret their own patients’ sleep studies. Physicians often worry that the long multi-step diagnostic process turns patients away. They wish they had more control over their patient’s experience and that the system was simpler. Some feel there is a conflict between insurance standards and medical standards.
One participant felt that the root of the current insurance issue is that insurance companies have a short-term business mindset. Therefore, we need to demonstrate that high quality sleep apnea care has hard cost savings. While the AASM has developed a white paper to demonstrate these costs, patients were unaware of this. Participants did not know how well this paper has been leveraged to advance the needs of sleep medicine. A financial argument combined with patient-led advocacy can bring about systemic change! Given that all parties are frustrated with insurance policies, moving forward, we must build stronger coalitions between patients and providers.
Poor communication throughout the complex process of getting care causes many patients to become frustrated and not trust the medical system; they don’t return and don’t receive proper treatment for their sleep apnea. The steps (and missteps) that occur between when the health care team first talks to their patients about sleep apnea to when the patient receives a well-fitting CPAP mask are staggering. Patients said that the amount of information their physicians provided was frequently limited or confusing. The group was enthusiastic about peer support; it is helpful to get support and guidance from other patients who have gone through similar experiences. Many suggested developing better channels for patients to collaborate with providers to co-create educational resources that are more understandable and responsive to individual needs. There was agreement among patients, clinicians, and researchers that more trust can be built by working together.
After sharing many ongoing challenges, the discussion turned to potential solutions and opportunities to work together to improve access to affordable, quality, sleep apnea care. Some ideas from the discussion include:
Problem: Patients do not come into the process knowing the complex steps needed to get diagnosed.
Solution: Create a living resource document, accessible to all, that clearly defines the processes of seeking care, diagnosis, treatment, and support. Patients are often not provided with the information they need and many don’t realize that if they are not compliant the insurer may take back the CPAP!
Problem: Lack of relevant and readable educational resources for patients Solution: Increase public awareness of sleep disorders and raise sleep health literacy. Patient information must be written for patients at the appropriate literacy levels, with health communication experts and patients involved. Clinicians often don’t realize that many terms sound like jargon and interfere with effective communications.
Problem: Lack of public advocacy for sleep apnea care Solution: Collaborate on a multi-stakeholder ‘Health Policy Advocacy Committee’ to support national advocacy efforts on Capitol Hill to shape insurance policy reform.
Problem: Lack of mechanisms for patient peer support Solution: Create better models for patients to effectively support patients, especially during the early stages of diagnosis. Sleep apnea patients need advocates and support systems. Many felt that MyApnea.Org needs to be in every doctor’s office so that patients can access good information and peer support. Can MyApnea.Org do more to offer quality, detailed, and personalized information? Share your thoughts in the comments section below!
Problem: Lack of patient driven research agenda Solution: Work toward patient engagement and empowerment so that patients can drive research questions that deliver results for patients. Researchers want to help patients.
If you attended, please add to this incomplete summary in the comments section! If you didn’t attend, keep the conversation going and let us know what you think in the comments section! Open dialogue between researchers, clinicians and patients is vital- let’s keep it alive!
Having patients involved in such a conference as SLEEP 2017 is a new experience. We first attended as a group from the patient engagement panel for MyApnea in 2016. This conference is for doctors, clinicians and researchers and is of immense importance to that group. For patients to be able to participate in any form is a tremendous step forward for both patients and the medical community. To find that doctors share our frustrations was very enlightening and surprising.
Having a dialogue between doctors and patients should be the natural order of things but it seldom happens. Building a working relationship is truly needed in order to get the best outcome for the patient. When the problem is highlighted at a conference like this, the first steps in building that relationship begins. We need more interactions like this and the ideas, concerns, suggestions and problems then need to be shared with other patient and doctor groups.
I thank everyone involved in getting this together and hope that it is the first of many collaborations.
RebeccaR, thanks for a fabulous and well articulated summary of our Patient, Researcher and Clinician collaborations during Sleep 2017! Everything happens in conversation and this meeting was a great example of that principle in action! I feel quite certain that all attendees walked away with a new perspective and empathy for each other as we work together to mend the frustrations for all multi-stakeholders.
Gee, why are such common sense steps articulated as being a "new discovery"? The entire society we live in on this planet is being pushed and driven to become more cooperative instead of competitional when interacting. This is a very big mega trend brought about by the latest in communication technologies and the human realization that the other person is both a human being and not just a "customer" or piece of meat that breathes. Why isnt all of medicine and other industries that are primarily service industries, being done this way where the depth of information and sharing of methods and practices is so much more thorough that any common goal, i.e. HEALTH, is reached by the natural alignment of interests instead of being driven by the time/money ratio in the traditional capitalistic paradigm? As a high functioning autistic, I see this as a completely revolutionary change in all aspects of life that will both break the limitations/faults of capitalism, while testing the intelligence and foresight of society to avoid the capture and takeover by the autocratic/bureaucratic tyranny that is marxist/communist economic structures. If we pass this test, time itself will be the new currency of economics and thus lead to a greater level of human happiness and fulfillment since scarcity is steadily being defeated with education and technology. Since my autism prevented me from learning the social paradigms that mankind establishes via social rules, the path to solve human problems by thinking outside of the "box" are much more readily apparent.
Beautifully stated! The word "discovery" was used because so many people who did get together for the Learning Lounge had not previously realized that doctors and patients have common goals. Although this should have been obvious, it was not. We hope that more dialogue will help generate more cooperation.
Terrific comments, Ruby and Sherry! As a physician, it was so terrific participating in such a dynamic discussion between patients and physicians. I know how rewarding it is to successfully treat a patient's sleep apnea, and see how treatment improves alertness, mood and quality of life. Unfortunately, I also know that there are many challenges in efficiently and effectively getting the right diagnostic tests and treatments to patients. In addition, long term successful sleep apnea treatment often requires patients and physicians to continue to work together to ensure that the right treatments/approaches are used over time (often adjustments are needed). Its sad to hear how often patients get one prescription for a CPAP device, encounter difficulties, and then give up. This Learning Lounge discussion was a great step for brainstorming ways patients and physicians can work to overcome the administrative (insurance), structural (how some clinics are organized) and communication gaps that exist. The American Academy of Sleep Medicine is also committed to addressing these concerns, and is working more closely with patients to identify new ways of solving problems.
We need to hear from many patients how to better partner to improve sleep health for all.