Of the various chronic diseases, respiratory disorders are among the most prevalent, underdiagnosed, debilitating, deadly and costly to manage. Chronic obstructive pulmonary disease (COPD) affects about 250 million people globally and was responsible for more than 3 million deaths in 2015. Neurologic disorders cause significant dysfunction of the respiratory muscles in over 330,000 persons worldwide, and an estimated 1 in 160 adults suffer from respiratory failure related to severe obesity.
Although there are accurate and effective technologies for the diagnosis and therapy of respiratory disorders such as oxygen, respiratory drug delivery and ventilation devices, many of these are still underutilized in the home.
Telehealth and connected respiratory care bring resources that were once limited to medical centers into the patient’s home. They enable continuous monitoring, early intervention and cross-disciplinary team care, which may be especially relevant for patients with advanced disease, multiple comorbidities or frequent exacerbations—that is, patients who require more intensive management that addresses the complexities of their disease. Connected care also offers the promise of greater access to care, more efficient and effective use of health resources, an improved patient experience and lower medical costs.
Where We Are Now—There Is No One Size Fits All
There is a disparity in the availability of respiratory health care. Many communities have well-established respiratory care systems, while others struggle to address the needs of their vulnerable populations with limited facilities. Even among the former, access to care may be hindered by geographic distance, transport limitations or financial difficulties. Furthermore, providing good care for varied patient lifestyles and choices will require individualized solutions.
Transforming the entire care process for chronic respiratory diseases is essential. Fragmented care should be replaced by continuous and mutual engagement. Every patient must be seen in the context of his or her specific needs, individual experiences, and cultural and societal realities. Each community must develop its own unique path to telehealth, guided by its resources, values and culture.
Where We Have to Go—No More Business As Usual
Connected respiratory care can help patients be more informed of their illness and new developments in diagnosis and therapy; more responsible for their behaviors and how these impact their health; more aware of their symptoms and disease progression; more involved in the day-to-day management of their disease and long-term goals; more in touch with various members of their interdisciplinary care team; and more proactive in the event of disease exacerbations and medical emergencies. Empowered patients who are inspired to take control of their lives can become important partners in their health care journeys.
However, if done improperly, telehealth can deepen social injustices by giving greater access to those most able to use telehealth services, including the healthy and “worried well,” rather than to those who need services most but lack reliable internet connections or are limited by language barriers or web illiteracy. Improper telehealth application may also incur greater health care costs by inaccurate diagnosis or overtreatment due to care discoordination.
Also under consideration are issues of data privacy, security and ownership. Cybercrime is a real threat, and health care data is among the most lucrative datamining targets. It is important to guard against biocrime, or manipulation of data or settings of medical devices over the web.
How We Move Forward—Respiratory Telecare by Design
The current problem with respiratory telecare is not one of science or technology, but of policy. It is not a problem of availability of services, but rather of their proper implementation. Providers need to understand how to fit telehealth into patients’ lives, rather than fitting their lives into existing technology. Some suggestions for this include:
Facilitate empowered self-care.
Only with effective engagement can patients responsibly choose to do what is right for themselves, rather than be forced to behave according to prescriptions or regulations. Use information to help patients make better decisions. Make data meaningful, not interruptive.
Make it personal.
It is essential that respiratory telecare be adapted (meaningful to the patient), targeted (related to the patient’s difficulties and needs), intelligible (comprehensive but not overwhelming) and supportive (providing hope, solutions and options).
Shift the focus.
Care delivery should not be based merely on stressing patients’ needs but also on amplifying their strengths. Transform respiratory telecare from reactive treatment of disease to proactive promotion of health.
Maximize community support.
It may seem counterintuitive, but self-care will increasingly take on a more societal character. Participation in self-care will be fueled, at least in part, by more community programs and social platforms for these activities. Family members can support a patient’s quest to get better by also living a healthy lifestyle and by encouraging adherence to therapy. Local volunteer groups can plan activities that patients can join and post these on the internet.
Respiratory monitoring devices must be interoperable; technology has to be validated for reliability; algorithms have to be more transparent to ensure accountability; and device performance has to be guaranteed in different age groups, sex and medical comorbidities. Consumer wearables today are primarily designed to measure physiologic variables. Technologies should recognize respiratory symptoms as well as deliver and respond to appropriate interventions. For instance, respiratory telecare can assist patients’ use of noninvasive ventilation more effectively, provide immediate feedback on proper or, more importantly, improper techniques, and enhance treatment adherence by correlating improved symptoms to regular device use. Increasingly, artificial intelligence and machine learning will underpin all efforts to harness the full potential of telehealth in order to enable more precise and proactive care.
Mitigate the dangers of technology.
It is important to remain cognizant of potential problems that may arise with the greater adoption of respiratory telecare in order to proactively manage these issues. These may involve the patient, such as psychological dependencies, or be technological deficiencies of the testing and monitoring devices.
Eliminate the hospital vs. home rivalry.
Facilitate information sharing between the hospital and the home; this is especially crucial during transitions of care and caregivers. Involve home health care providers in discharge planning.
Foster scientific citizenship.
There is so much that is not known about respiratory telecare. A better understanding of how a patient uses telehealth and feels about using it can promote an ongoing dialogue between patients, engineers and health care providers.
Identify the choke points of care.
Address reasons for disengagement from, distrust of, or even hostility to respiratory telecare. Work with other providers, industry, businesses and government to increase access to and support sustainable telehealth programs, to advocate for equitable health resource allocation, and to remain agile for new scientific discoveries and advances in technology.
The value of telehealth lies not in the technology, but in the problems it can help solve. Done properly, telehealth can enhance the efficiency and quality of care, improve health outcomes, and help empower patients to make informed decisions. Beyond the current concerns regarding effectiveness, safety and the availability of devices and services, the promise of technology is larger—better web-based tools for education, dialogue and coaching and enhanced remote monitoring features that support more precise and proactive care. Better care for chronic respiratory disorders can prolong survival, improve quality of life, allow patients to remain active and reduce health care utilization and costs.