
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.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.
[SHS] Humanities and Social Sciences
[SHS] Humanities and Social Sciences
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