Patient-centered care in the era of technological revolutions and permacrisis

Never has there been a greater need to harken back to the origins of modern clinical medicine as now during the era of telemedicine, artificial intelligence, electronic medical charting, and heretofore uncertain future technological revolutions. Sir William Osler, who has frequently been described as the Father of Modern Medicine, stated, “Care more for the individual patient than for the special features of the disease … put yourself in his place … the kindly word, the cheerful greeting, the sympathetic look—these the patient understands.” It appears that we are sailing farther and farther away from what is the foundation of clinical medicine: the patient–provider relationship.¹ Zulman et al, after a thorough review of the literature, identified the various elements that are vital for the delivery of patient-centered care and patient satisfaction, which included the need to take a moment to prepare and focus before greeting a patient; listening intently and completely by sitting down, leaning forward, and avoiding interruptions; agreeing with the patient on what matters most by identifying what the patient cares about the most and incorporating these priorities into the visit; connecting with the patient’s story with regard to their life circumstances and acknowledging their efforts and celebrating their successes; and, finally, exploring and watching for emotional cues and their cultural values and beliefs and validating their emotions while practicing aequanimitas.¹ However, time constraints due to system-imposed 40/20-minute visit slots, “meaningful” use of the electronic medical records, telephone visits, telemedicine visits, omnipresent scribes, billing/coding, insurance paperwork, and process changes by policy wonks clutter the day-to-day office visit, while artificial intelligence and speaking to a sentient machine loom in the not-so-very-distant future.

An important reason for our move toward number crunching and away from the humanity of the provider–patient relationship is the fact that quantitative approaches armed with P values, propensity scores, multivariate models, and clinical decision support systems are driving clinical science and evidence-based medicine, and therefore the practice of medicine. Although these approaches are vital for rigorous methodology and the scientific approach, they are missing the humanistic element of qualitative data. The need for a mixed-methods approach of including both quantitative and qualitative data to better understand the patient-centered aspects and meaning of the various treatments and interventions that are being tested is of immeasurable value to medical practice. We need more qualitative studies to inform us about the patient’s experience. In the words of Sir Osler, “Listen to your patient, (s)he is telling you the diagnosis,” and one could extend that to their personal experience.

In this issue of the Journal of Clinical Sleep Medicine, Jones et al have shed more light on experiences of patients with obstructive sleep apnea when initiating continuous positive airway pressure therapy (CPAP) during a time of global crisis: the COVID-19 pandemic and permacrisis.^2,3 The COVID-19 pandemic was marked by supply-chain woes, concerns regarding aerosolization of the severe acute respiratory syndrome coronavirus 2 by CPAP therapy, device recall, health disparities, and limited access to care.^4–8 At the same time, this period also saw the importance of obstructive sleep apnea as a contributor to severe COVID-19 and saw payor leniency toward regulatory barriers for telemedicine and face-to-face visits.^9–12 Jones et al conducted their novel qualitative study in the United Kingdom at the time of such tumult and found various thematic areas highlighting the positive and negative experiences of patients in getting their diagnosis, adapting to CPAP treatment, monitoring their treatment, and the impact of the COVID-19 pandemic on the collective experience.² A notable finding was the varied reception of telemedicine and how it should not substitute for the face-to-face appointment and the clinical relationship. Patients are intelligent consumers of health care and can easily tell when they are not receiving the level of care that they believe they deserve. Some of the reports raised concerns about the patients being on a list that medical professionals just want to get through, or how they dehumanize or depersonalize care delivery, and, finally, their preference to see someone on a computer screen rather than just hear from their health care provider. In contrast, others appreciated the time efficiencies of a virtual appointment that did not warrant travel and long waits in clinics. We need to listen to these varied voices and preferences and tailor therapies based upon an individual patient’s preference. More importantly, we need to contextualize the quantitative research findings of randomized controlled trials with the explanatory qualitative studies. These are vital for future implementation science efforts and uptake of study findings. Considering that it takes an average of 17 years for research evidence to reach clinical practice, we need to embed qualitative research within quantitative research to glean important barriers and facilitators for future uptake of the intervention.^13,14 It can be easily argued that every clinical trial poses an implementation question with regard to how to operationalize the clinical intervention—be it a drug, device, or software.¹⁵

The issue of poor CPAP adherence in patients with obstructive sleep apnea is a major one that is both contributing to poor care and hampering the conduct of large clinical trials aimed at proving effectiveness of CPAP therapy in reducing morbidity and mortality.^16–18 Although qualitative and mixed-method studies regarding the trials and tribulations of patients with obstructive sleep apnea undertaking their journey for diagnosis and treatment with CPAP have been conducted previously, the work by Jones et al provides important information regarding patient experiences in the middle of the COVID-19 pandemic.^2,19–23 The human nature of behavior change and the need to make meaningful contact with another human on sensitive topics pertaining to patients’ health is going to be put to test by the hype of data- and machine-driven approaches.²⁴ For decades the health care systems and others have tried various approaches to convert scientific evidence about best practices to effect behavioral changes and health benefits. Whereas machine- or human-driven approaches to improving CPAP adherence exist,^25,26 the future will depend on customization, combinatorial approaches, and, more importantly, patient preference, thereby giving the patient the right to choose.

DISCLOSURE STATEMENT

During the writing of this article, Dr. Parthasarathy was funded by grants from the National Institutes of Health (R25-HL126140, OT2-HL161847, C06-OD028307, OT2-HL-156812, OT2HL158287, and 1OT2HL156812-01), a grant from the Patient-Centered Outcomes Research Institute (CER-2018C2-13262), grants from Philips, Inc. (0483-06-161311-73077) and WHOOP, Inc., and grants from the American Thoracic Society (from the Centers for Disease Control and Prevention [CDC FR Doc. 2021–19050]). Dr. Parthasarathy has received personal fees from Jazz Pharmaceuticals, Inc., UpToDate, Inc., and Abbvie, Inc. that are unrelated to the scope of this article. Dr. Parthasarathy has a patent US20160213879A1 licensed to SaiOx, Inc., with which he has no financial relationship other than licensing of the patent issued to the University of Arizona. This work was not industry-supported and the author reports no conflicts of interest.