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!