Weaving the Internet of Sleep: The Future of Patient-Centric Collaborative Sleep Health Management Using Web-Based Platforms

Wireless telemonitoring technology for continuous positive airway pressure (PAP) therapy became commercially available over a decade ago. Use of objective PAP data is a core component of providing good chronic illness care for patients with obstructive sleep apnea (OSA). One of the first published studies of PAP telemonitoring established the accuracy of wirelessly transmitted data from PAP device to web-based platform when compared to data downloaded via smartcard.¹ Another early study of wireless telemonitoring examined the effect of giving providers (but not patients) access to the daily PAP adherence and efficacy data and allowing them to prospectively act on that data.²

In this month's issue of SLEEP, Kuna and colleagues show that PAP adherence is significantly improved by providing patients with access to their own PAP data via a website.³ The study randomized obstructive sleep apnea (OSA) patients to usual care, usual care with access to PAP usage, or usual care with access to PAP usage and a financial incentive. The study's findings are all the more intriguing because the third group, despite being provided with a financial incentive of up to $210 in the first week, did not have higher adherence than the second group (usual care with web-access alone). While those in the financial incentive group reported logging on to the website more frequently, the financial incentive did not result in higher adherence, suggesting that increased adherence had more to do with patients being able to access, view, and track their own data than the financial reward itself.

The findings of Kuna et al. are consistent with a similar study evaluating the effect on compliance when an interactive web-site providing PAP data to both patients and providers is used.⁴ Both studies simply provided patients with access to their own data for self-monitoring purposes, but did not offer any extra features, such as gamification, or other kinds of interactivity (e.g., communication with providers via secure messaging or use of online forums that would allow interactions with other patients).

These studies represent the beginning of a new era of looking at how we might engage patients not just at initiation of therapy, but more importantly the maintenance of therapy over time. Studies from other chronic illnesses show that fostering self-management is an important component of providing sustained chronic illness care.⁵ New interactive platforms are allowing patients to self-manage chronic conditions in ways we are only now starting to explore. The insomnia field has transitioned from evaluating more basic, non-interactive online programs⁶ to personalized, interactive online programs. For example, Espie and colleagues utilized a “virtual” therapist to help deliver a web-based CBT-I program.⁷ And more recently, using instructional design methods aimed at taking advantage of the flexibility and power of programming websites,⁸ Anderson and colleagues designed an open-source platform with novel features including the ability of the system to respond to the speed at which users go through the program to deliver information in a different fashion for different users.⁹

The gap in the provision of care for patients with OSA is significant. Third-party payors reimburse for OSA testing, prescriptions for PAP therapy, and initial set-up, but there is often little reimbursement to provide ongoing information and support after the initial PAP set-up, save for replacement supplies. Because of this gap in care, online forums designed for OSA patients have tens of thousands of unique visitors per month in the United States, and these interactions are occurring outside of clinical care. To help fill this gap, we need to build on the studies by Kuna et al.³ and other investigators to create well-designed, patient-centric, collaborative care platforms that help support OSA patients both initially and over time. Collaborative care refers to patients and providers working closely together in ongoing OSA management.

The American Sleep Apnea Association (ASAA) maintains a wealth of knowledge about the needs and concerns of patients. The ASAA has sponsored in-person AWAKE groups for over two decades and has provided information and support via online forums for over one decade. The ASAA knows how to engage patients over time and was, in fact, the original awardee of PCORI's Patient-Powered Research Network for sleep apnea. There are important lessons to be learned by partnering with organizations like the ASAA. Several key points for online engagement include: (1) helping patients “connect the dots” and understand how sleep apnea affects their daily functioning and other medical comorbidities; (2) answering patients' questions in a timely and understandable way, consistent with IOM's recommendations for providing the right support at the right time;¹⁰ and (3) providing a valuable resource to patients, so that they are incentivized to come back repeatedly over time.

Future studies of interactive websites for OSA patients would do well to incorporate these kinds of features to improve patient engagement and ultimately, patient use of therapy. The study by Kuna et al.³ shows a gradual decrease in PAP adherence of 50% over the first 3 months. Dose-response studies clearly show that a greater benefit is obtained from PAP the more it is used.¹¹ Studies designed to examine ways to provide information and support over time that help to mitigate this degradation in PAP adherence are urgently needed.

Finally, online platforms facilitate the movement into personalized OSA medicine. Completing questionnaires and sleep diaries online allow the PAP prescription to move away from the empirically unsupported CMS adherence reimbursement policy to a tailored recommendation based on patient-specific data, allowing sleep medicine to move from disease-based care to patient-based care. For example, if the patient regularly sleeps 8 hours per night and uses PAP therapy 4 hours per night, therapy is only being used half of the night. Platforms can display these metrics and be programmed with automated messages to encourage behavioral change. Initial sleep consultations may even be possible via these platforms, and may improve access to sleep specialty care in an era of critical shortages in sleep practitioners.

How future web-based platforms are designed and utilized will be an iterative process that will need to include all stake-holders working together as partners, including patients and their families/caregivers, researchers, clinicians, and industry.

CITATION

Stepnowsky C, Sarmiento KF, Amdur A. Weaving the internet of sleep: the future of patient-centric collaborative sleep health management using web-based platforms. SLEEP 2015;38(8):1157–1158.

DISCLOSURE STATEMENT

Dr. Stepnowsky has recived research support from the Department of Veterans Affairs. Adam Amdur has recived research support from SAPCON PPRN funded by PCORnet. Dr. Sarmiento has indicated no financial conflicts of interest.