Can Healthcare be Humanized? The twin challenges of clinician engagement and patient empowerment in a complex system

! Cella,!D.!(2025).!Can!Healthcare!be!Humanized?!The!twin!challenges!of!clinician!engagement!and!patient!empowerment!in!a!complex!system.!In!Proceedings! of!the!Paris!Institute!for!Advanced!Study!(Vol.!21).!https://doi.org/10.5281/zenodo.17281814 ! This!is!an!open!access!article!published!under!the!Creative!Commons!Attribution-NonCommercial!4.0!International!Public!License!(CC!BY-NC!4.0)! Can Healthcare be Humanized? The twin challenges of clinician engagement and patient empowerment in a complex system David Cella1 1 Northwestern University TO CITE Cella, D. (2025). Can Healthcare be Humanized? The twin challenges of clinician engagement and patient empowerment in a complex system. In Proceedings of the Paris Institute for Advanced Study (Vol. 21). https://doi.org/10.5281/zenodo.17281814 PUBLICATION DATE 06/10/2025 ABSTRACT One approach toward humanizing healthcare is through the meaningful use of patient-reported outcome measures (PROMs) woven into clinical practice. For this to be successful, clinicians must regard them as useful, informative, and actionable. Patients must find them to be relevant to the care they are receiving, and reasonably easy to complete. The health system responsible for delivering care must support the smooth integration of PROMs into an already-complex clinical workflow. All parties must value and support how the information obtained improves communication, care planning, and/or outcomes. It has proven extremely challenging across health systems around the world to achieve this success. In part, this is because proper planning and assessment of institutional readiness has not been conducted. Another barrier has been the vast array of PROMs available from which to choose, and a measurement field that has not yet evolved into something resembling a universal standard. The Patient Reported Outcomes Measurement Information System (PROMIS) provides the potential for such a standard. Its careful implementation can help engineer a more humanized healthcare system by providing a common metric for interpretation that drives discussion and clinical action, whereby patients and clinicians together are co-producing optimal health as defined by the patient’s values. Key steps toward realizing this vision require assessment of institutional readiness, education and training of clinicians and patients, commitment of technical support, role clarification to ensure workflow integration, piloting to monitor local success, and ongoing monitoring of organizational culture to manage change where necessary. What is humanized healthcare? In this essay, “healthcare” is defined as the structure and function of people and systems that aim to prevent and treat human disease. Ideally, these structures, and the people working within them, are designed to maximize the length and quality of the lives they serve. In this context, “humanized healthcare” refers to a person-centered approach in which clinicians recognize the individual nature of disease expression and therefore deploy a process of continuous monitoring of factors relevant to delivery of optimal treatment. One could just as easily call this individualized ! 2 healthcare, owing to the emphasis on the unique physical, mental, social, and cultural influences on any individual’s health status. The prevailing view of illness and care has historically been organized under a medical model. Although there are competing models (e.g., nursing model, social model, holistic model), a medical model still dominates the way much of healthcare is organized (Emanuel & Emanuel, 1992). In its most traditional (paternalistic) form, doctors, nurses, and other skilled professionals deliver healthcare by making decisions based on the evaluation of signs and symptoms. They recommend treatments and ideally assess outcomes. In contrast, the role of the patient is to comply with the professional’s recommendations. In a medical model, the patient’s presentation is understood in terms of reason for visit (chief complaint), history, physical examination, ancillary tests as needed, relevant diagnosis, treatment plan, and prognosis. Little room is made for individual variation or input. A major shift toward humanizing healthcare occurred in 2001, after the Institute of Medicine (now National Academy of Medicine) released its landmark work: “Crossing the Quality Chasm: A New Health System for the 21st Century” (Institute of Medicine, 2001). By making a case for a more patient-responsive approach to care, this report laid the foundation. This was followed by patient-centered “sister” movements and institutions devoted to re-humanizing healthcare. Some of these include the 2015 United States Congress 21st Century Cures Act, which mandated a patient-focused drug development process. This stimulated the United States Food and Drug Administration to partner with the pharmaceutical industry and various public-private partnerships to more formally and explicitly include patient input across the translational drug development pipeline. Sometime earlier, under the Patient Protection and Affordable Care Act of 2010, the U.S. Congress created the Patient-Centered Outcomes Research Institute (PCORI), which requires that all research include substantial patient input from inception through implementation and publication. The Centers for Medicare and Medicaid Services (CMS), with support from organizations such as the National Quality Forum (NQF) and the National Committee for Quality Assurance (NCQA), has increased their commitment to inclusion of patient-centered outcomes as the basis for measuring the quality of healthcare services. Through this time and into the present day, hundreds of patient advocacy groups have elevated their voices in drug development and have participated in reviews of drug value with payers and professional societies. Even people with rare diseases, often neglected in pharmaceutical drug development, have gathered under the National Organization of Rare Disorders (NORD) to amplify their concerns and participate in scientific advancement. Healthcare systems aim to provide a more humanized, patient-centered approach by seeking input directly from patients to plan and implement treatments. This approach directly encourages active participation of the individual patient in clarifying the problem (whole person diagnosis) and planning care. In so doing, health is “co-produced” by clinician and patient through education, counseling, and shared decision making (Elwin et al., 2020; Perry et al., 2025). This is particularly important at inflection points in one’s health, such as a new diagnosis, disease progression, or remission/cure. Embedded within this approach is careful consideration of economic and cultural factors that influence people’s values vis-à-vis their health. A health system that accomplishes mutual health co-production can thereby provide equitable, individualized care. ! 3 More broadly, health systems that incorporate patient preferences into their operational and data systems will produce services that are better aligned with patient needs. This, in turn, can improve individual and public health and reduce wasteful or inefficient care. This essay focuses on humanizing the United States healthcare system, although the issues raised likely apply to places where Western medicine is practiced around the world. Most illustrations are drawn from the management of chronic diseases, because this activity consumes approximately 75% of healthcare cost/activity, with cost estimates reaching nearly 50 trillion U.S. dollars by 2030 (Hacker, 2024). The context for the observations, suggestions, and conclusions drawn herein is the broader “science of patient input” (Anderson & McCleary, 2016), a term used to reflect rigorous methods used to integrate patient perspectives, needs, and priorities into biomedical research, therapeutic development, and healthcare delivery. These methods are qualitative, quantitative, and a mixture of the two, often fueled by a passionate community of stakeholders, including patients, family members, researchers, regulators, and payers. My focus will be on the meaningful use of patient-reported outcome measures - or PROMs - in the healthcare setting, recognizing that the science and strategies driving this area lie within the larger context of patient-centered science. Why is it important to humanize healthcare? (the evidence) Healthcare has shifted dramatically in the past 20 years. Technology, massive information availability, and increasing administrative demands have changed the way we deliver care. Advances in diagnosis and treatment have been impressive. This is not so much the case in disease prevention, apart from public health and vaccine advances. When it comes to chronic diseases, preventive strategies rely on behaviors that are challenging to modify: diet, physical activity, tobacco use, and alcohol consumption. Chronic diseases are on a steady rise, accounting for most mortality worldwide and consuming healthcare resources (OECD, 2025). The impressive advances in treatments and technologies have come with a cost. That cost is manifested in clinician alienation, overwhelm, and burnout. Treatment decisions can often be made by guidelines, payment incentives, and critical pathways aimed at increasing efficiency; these are not always based on the needs or preferences of patients. Clinicians are easily distracted and time-challenged, stealing the person-to-person connection that had once been so vital to effective care. On their side, patients often find themselves confused by information overload and uncertain about how to evaluate the quality of the care they are seeking or receiving. With increasing knowledge, technology, and treatment options, patient-centeredness has diminished. Can this be reversed by re-humanizing healthcare?1 If so, how can that be done? One very basic way to re-humanize healthcare is to engage patients to provide direct, individualized information about their health status, including any symptoms or functional challenges they are facing, particularly as they relate to things that can reasonably be helped by the healthcare system. PROMs are the vehicle for doing this. Routine use of PROMs in individual patient care can have both individual and societal benefits (Black, 2013; Gibbons et al., 2021). 1 I say “re-humanizing” because healthcare centuries ago was characterized far more by the doctor-patient relationship, admittedly in large part due to the lack of effective treatments for most maladies. ! 4 Abundant research evidence in chronic disease settings shows that routine monitoring of patient symptoms and function improves communication, enhances the care experience, and improves quality of life (Basch et al., 2015; 2017; 2025; Cella et al., 2024; 2025; Cracchiolo et al., 2024; Davis et al., 2007; Gibbons et al., 2021; Vandyk et al., 2012; Velikova et al., 2004; Wagner et al., 2015). Patient reports of symptoms and function predict service utilization, including high-cost avoidable utilization such as emergency department visits, unscheduled office visits, and hospitalization. Their use has been shown to reduce overall healthcare cost, improve adherence to medication recommendations, and in some cases, lengthen life (Barbera et al., 2020a; 2020b; Basch et al., 2015; 2017; 2025; Chan et al., 2009; Denis et al., 2019; Gotay et al., 2008; Harrison et al., 2012; Pearman et al., 2015; Wagner et al., 2011). The very process of patient self‐reporting can improve clinician-patient communication, symptom management, patient self-efficacy, quality of life, and satisfaction with care (Absolom et al., 2021; Detmar et al., 2002; Velikova et al., 2004). PROMs can not only inform the clinician with a deeper understanding of the individual patient; they also have the potential to inform patients about their health status in relation to others with their condition. Furthermore, when enough PROM data are gathered on previously-treated patients, the information can inform decisions about proceeding with treatment in cases where there are options. Similarly, providers can be compared to one another in terms of their PROM results, giving new patients valuable information when choosing a clinician. Use of PROMs can improve patient self-awareness and communication about symptoms and concerns, promote better treatment adherence, and increase the overall care experience, including satisfaction with care (Carfora et al., 2022; Detmar et al., 2002; Wagner et al., 2011). It can also help identify otherwise occult symptoms or concerns that would benefit from clinical consultation (Campbell et al., 2022; Schougaard et al., 2023). If the PROM used has population reference values, then clinicians and patients can compare their health status to that of other people with their condition, or with the general population (Dai et al., 2021; Gibbons et al., 2021). When a health system aggregates its PROM data across patients and service lines, administrators can then make strategic decisions on where to obtain maximum benefit from targeted service line intervention. This has been the practice, for example, of a Harvard University-affiliated healthcare system (Liu et al., 2024; Sisodia et al., 2020), at the University of Rochester health system (Baumhauer, 2017), at the Cleveland Clinic across diseases (https://consultqd.clevelandclinic.org/tag/patient-reportedoutcomes-measurement-information-system-promis), at Amsterdam University Medical Centers (Groenewegen et al., 2024), using the “MyChart” patient portal in an Epic electronic health record (EHR) environment, and across Denmark using PROMs to reduce the need for in-person visits when people with chronic illnesses are doing well (Hjollund et al., 2023). Yet, these research findings are rarely implemented in clinical practice outside of the research setting. Very few clinics use any kind of standard patient assessment of symptoms or concerns. Use by specialty area varies from 10-15% in general medical practice and some specialties, although there are exceptions, with as many as 80-85% of selected surgical subspecialties using PROMs (Cherrez-Ojeda et al., 2024; Joeris et al., 2021). Among those practices that attempt to routinely query patients, typically fewer than half of the invited patients complete the assessment (Hjolland et al., 2023; Terwee et al., 2023; van Engen et al., 2024), unless the assessment is done in the waiting room prior to visit, where patient adherence can be checked and confirmed. For those patients who do complete pre-visit questionnaires, again, fewer than half ! 5 find that the information obtained is reviewed and used to inform the visit (Lyleroehr et al., 2024). Over time, this degrades any incentive that patients might have to continue to adhere to assessment requests. Thus, individualized patient input can easily be lost over time. In essence, we have a situation in which healthcare professionals are not successfully transitioning care to be truly patient-centered, despite their best intentions. One reason for this relates to deep, ingrained medical traditions that render patients as passive recipients of care provided by experts, despite the recent increase in evidence that active patient participation improves outcomes in several chronic diseases. Another reason may be the magnitude of benefit relative to the cost of implementation. In their systematic review of 116 randomized clinical trials, Gibbons and colleagues (2021) concluded that PROM feedback produces moderate improvements in communication between clinicians and patients as well as in problem identification (diagnosis), disease control, and small improvements to quality of life. The same review turned up several areas (pain, social function, health perception) where little to no benefit was seen, and data quality that indicates a need for more rigorous study. Perhaps routine adoption would be more vigorous if prior research results were more consistently compelling. What are the barriers to humanizing healthcare? Barriers to implementation of more humanistic care come from institutional structures and demands, clinicians providing care, and even patients themselves. Resource limitations, a general resistance to change, and systemic bias can conspire to maintain the status quo (Berkman et al, 2018). Care providers around the world face extraordinary time pressures that push them to continue that status quo approach. Adding a routine collection of patient-reported information is then likely to be regarded as a threat to efficiency. Also, many clinicians believe they already obtain the information they need from patients, apparently unaware of the published evidence that this is not necessarily the case when it comes to pain and other symptoms (Arenare et al., 2024; Basch, 2010; Cella & Fallowfield, 2008; Laugsand et al., 2010). Patients themselves also pose barriers to successful implementation of patient-centered care. Many, but certainly not all, prefer the historic passive patient role. Most will not engage in pre-visit assessments unless called on explicitly to do so. Absent explanation, patients tend not to appreciate the value of answering questions, especially if they do not see their responses get used. Operating within the clinician-patient relationship are also systemic and unconscious biases that can affect communication and decision-making. Unless they are structured to include a formalized PROM assessment from inception, most care settings are functionally resistant to implementation, often citing competing demands and limited evidence of its added value. Institutional Barriers Institutional barriers, sometimes referred to as structural barriers, refer to the built and practice-driving environment within which healthcare is provided. This includes administrative policies, performance demands/expectations, available technology, human resources (staffing), and prevailing professional and practice guidelines. If these various components are not aligned, or at least managed, practitioners will experience resistance to the use of formal assessments of ! 6 patient self-reported health status via PROMs. Clinical settings that provide care for people with chronic diseases are typically staffed by people with a variety of training and experience, including physicians, nurses, advanced practice providers, technologists and technicians, and ancillary patient service representatives who check patients in, prepare the examination room and escort the patient, and close the encounter upon completion of the visit. Usually, none of these individuals is clearly identified as having responsibility to collect PROM data, often leading to low collection rates. The electronic health record (EHR) with its patient portal has the potential to address this role diffusion. Patients are therefore often sent an email request to log into their individual portal and complete a questionnaire prior to the visit. However, this approach carries several barriers of its own. First, a patient must have an active email address that is monitored routinely. Second, the patient must be signed up for secure portal access. Third, the patient must remember password access and sometimes additional multifactor authorization procedures. By this time, in the typical health system, half or more patients are excluded. The excluded group is inevitably overrepresented by already-marginalized patients with lower educational levels, compounding systemic biases already present in healthcare delivery (Cella et al., 2025; Perry et al., 2025). Among those patients who do manage to complete the requested PROM, most do not observe that it gets reviewed or used in any way. This may be because it is being collected to fulfill a requirement rather than to guide care planning. Another type of institutional barrier, outside of the treating institution itself, includes treatment guidelines from professional societies and healthcare quality organizations. These guidelines often include patient-centered recommendations that include the collection of specific PROMs. Although well-intentioned, the accumulation of guidelines across general medical and specialty/subspecialty care can overwhelm a parent institution with multiple different PROMs recommended across a range of chronic disorders. The information technology (IT) burden of loading multiple measures, often measuring the same or very similar things (e.g., pain, fatigue, depression), can be overwhelming and confusing to IT staff who historically have not prioritized this activity. Clinician Barriers Perhaps it goes without saying, but the value proposition for routine collection of PROMs in clinical practice rests on an assumption of clinician engagement in the effort. Without clinician engagement, the use of PROMs in healthcare will remain restricted to research. There are several factors that threaten clinician engagement. The first is time. When a clinician is presented with the evidence that routine patient monitoring with a PROM produces better health and well-being in patients, the typical response, no matter how interested, is tinged with fear…fear that adding this to their routine will take time. More time spent per patient will extend work hours beyond an already-stressful number. Indeed, more complex patients who report multiple concerns will require longer visits (Katzan, Thompson, & Lapin, 2024). Also, the initial set-up and training required for success will take some time. However, the idea that implementation after initiation will consume more time per patient overall is unfounded, especially when done electronically (Absolom et al., 2021; Detmar et al., 2002; Khakzad et al., 2024). In fact, it is sometimes found that having the structured patient symptom and function information in advance of the encounter reduces the ! 7 amount of time needed for a meaningful visit, because it helps the clinician get right to the presenting issues, including issues that might not have otherwise come up in discussion. Like all of us, clinicians are subject to bias, both conscious and unconscious. One common perception is that the use of a PROM will not add to what the clinician already knows about the patient. Some clinicians are even offended by the suggestion that they do not know their patients well enough to assess relevant clinical manifestations through the usual exchanges and laboratory tests. Others are simply not interested in adding a new approach to what has become a familiar routine. Early adopters of any innovation are rare. These and other clinician perspectives can serve to undermine the willingness and readiness of a clinic to transform its approach to center around a formal assessment of how patients are feeling and functioning in their world. Let’s assume that we have willing and interested clinical staff across the spectrum of the service line, and that we have administrative support and an IT commitment to program whatever is needed to enable use. Even here, there is a barrier to successful launch, and it resides within clinicians. That barrier is understanding. Standard education and training of medical, nursing, and technical staff do not include the use and interpretation of PROMs. Added to this is the fact that there is an absolutely dizzying array of PROM options available for use. As a result, the clinician approaches decisions about what PROM to use with limited awareness of its reliability, validity, or utility, ill-equipped to evaluate it critically for relevance in their clinical setting. Absent this information, clinicians often rely upon PROMs that have been used and published in research projects done in their specialty area, or upon what a trusted colleague might recommend. This approach lacks two critical elements required to sustain PROM use in practice: Interpretability and Actionability! Clinicians must understand what the PROM score means, and if the PROM report does not come with clear direction on specific clinical action needed (even if that action is merely to query the patient for more information), then the PROM will fade from use over time. Patient Barriers As with clinicians, patient engagement is also essential for successful PROM use in practice. Yet, without proper motivation, patients will fall short of the time and effort required to answer a targeted set of questions in preparation for clinical encounters. When patients are queried at home (either through email or “snail mail”), typical response rates fall below 30%, hardly sufficient for delivery of patient-centered care at the clinic population level. Efforts to increase that number to over 50% have met with success at our institution and others, but it remains challenging to drive those numbers up to the preferred 80-90% level. Like their clinician counterparts, patients are inundated with requests for form completion, including insurance information, care experience ratings, and required regulatory forms in addition to PROMs. The length of the PROM can also be a deterrent, especially if it includes questions perceived by patients to be irrelevant to their condition. There are also cognitive and sensory barriers that some patients face. Low literacy, language comprehension, visual challenges, and cognitive processing deficits can all contribute to reduced participation in a PROM program. Finally, patients need to see how the PROM is used in practice to ensure their continued participation. ! 8 Clearly, the solution here is to provide brief, relevant, easy-to-read PROMs, with reminders and assistance as needed, and to show patients how they are used in practice, as a combined strategy to remove patient barriers to meaningful PROM use. More on this in the next section. How can this be changed? I recently completed a large system-wide patient-centered implementation project in cancer symptom management (Cella et al., 2023; 2025). Drawing from that project, from lived experience working with three US-based health systems, and informed by the published literature of the past three decades, I will summarize what I believe to be the necessary tools, conditions, and actions needed to achieve a humanistic approach to healthcare. Let’s start with Measurement “If you can not measure it, you can not improve it.” This famous quote from physicist Lord Kelvin applies to health just as it applies to temperature. We cannot improve what we cannot measure, or at least, we won’t know if we improved something unless we measure it. This is what inspired me to focus my career as a psychologist on measurement. If we are to improve any subjective aspect of the human experience, we must first be able to measure it. The best (if not only) way to know how a person is feeling is to ask directly. It is critical to know the right questions to ask at the right time. Thus, my focused way to support patient-centered care has been the development, validation, and application of patient self-report of health status and quality of life, turning the subjective into objective numbers that allow for comparison to others and tracking of individuals over time. To achieve this, we develop and deploy carefully constructed and validated measures. Long ago, I was directed by psychiatrist and mentor Dr. Jimmie Holland to focus my measurement interest on quality of life as it relates to cancer and other life-threatening illnesses. Quickly, the term “quality of life” was qualified as Health-related quality of life (HRQoL) to narrow the scope away from issues that are not related to one’s health and healthcare. HRQoL is a fundamentally subjective experience that is meant to reflect the summation of one’s symptoms from disease and treatment, physical, mental, and social function, general perceptions of health, and global perspectives on life satisfaction and quality.2 It reflects one’s appraisal of life quality given the context of one’s health and illness. This is illustrated in Figure 1, adapted from Wilson and Cleary (1995). I chose this figure from a host of others because it centers on a medical modeldriven causal pathway and then expands on it with psychosocial influences. Approaching today’s healthcare delivery systems with such a model has the best possible chance to effect the change needed because its familiar perspective resonates with clinicians and administrators. 2 Although the term “health-related quality of life” remains accepted and widely used, it was replaced by the U.S. Food and Drug Administration with the more general, neutral term “Patient Reported Outcomes (PROs)” for use in the context of drug evaluation. This term has become more dominant in healthcare settings. I therefore use the PRO and PRO Measure (PROM) to refer to HRQoL and other self-report measures of health status. ! 9 Figure 1 Conceptual Model for Health-related Quality of Life Adapted from Wilson and Cleary (1995) When HRQoL is measured in patients in healthcare, the questionnaires are often referred to as Patient Reported Outcome Measures (PROMs). There are literally thousands of PROM options available, perhaps too many (more on this later). PROMs have the potential to guide patient-centered care when incorporated into practice, because they can elicit troubling symptoms, patient needs, and preferences in support of communication and shared decision-making. If a health system commits to this at the enterprise level, aggregated PROM data can identify structural targets for system-wide quality improvement. PROMs can also improve communication between clinicians and patients, improving disease outcomes and health-related quality of life (Detmar et al., 2002; Gibbons et al., 2021; Velikova et al., 2004; Wagner et al., 2015). We now have a common, universal, and global patient assessment platform, the “Patient Reported Outcomes Measurement Information System” (PROMIS), that can unify the measurement field and provide common ground for measuring patient-centered outcomes and tracking change (Cella & Hays, 2022; Cella et al., 2010). A unified PROM approach has the potential to transform healthcare delivery, particularly for people with complex or multiple chronic conditions. Engineering humanized healthcare with PROMs Perhaps the most important requirement for achieving success with PROMIS and similar PROMs is integrating them seamlessly and meaningfully into clinical practice. Clinicians must therefore have the tools, knowledge, and resources to administer and interpret PROMs in real time. The information gathered in PROMs should flow with other clinical data from laboratories, Figure 1. Conceptual Model for Health-related Quality of Life Characteristics of Individual Biological and Physiological Variables Symptom Status Functional Status General Health Perceptions Global Quality of Life / Life Satisfaction Characteristics of Environment Adapted from Wilson & Cleary (1995) 1 Health-related Quality of Life (HRQoL) ! 16 References Absolom, K., Warrington, L., Hudson, E., Hewison, J., Morris, C., Holch, P., & Velikova, G. (2021). Phase III randomized controlled trial of eRAPID: eHealth intervention during chemotherapy. Journal of Clinical Oncology, 39(7), 734-747. Amtmann, D., Cook, K., Johnson, K., & Cella, D. (2011). The PROMIS initiative: Involvement of rehabilitation stakeholders in development and examples of applications in rehabilitation research. 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