Challenges in Health Care for Persons With Multiple Chronic Conditions—Where to Go and How to Get There?

In this study, Watson et al¹ note that, “The US has a growing population of people living with multiple chronic conditions (MCC), yet the health system is ill-designed to meet their needs.” If anything, Watson et al¹ understate the reality of the situation. Approximately 75% of older adults, and more than one-third of all adults receiving health care, have MCC. Adults living with MCC account for 64% of clinician visits, 70% of hospital stays, 83% of prescriptions, 71% of all health care spending, and 93% of Medicare spending.² As has been well reported, siloed, disease-based health care for persons with MCC may be burdensome, fragmented, of uncertain benefit and potential harm, and not aligned with individuals’ health priorities (ie, what matters most to them about their health and health care).³ The result of all this is the imposition of unwanted and unhelpful care, neglect of potentially helpful interventions that do not fall under the narrow confines of disease-based care, and inattention to what matters to each person.

Through a Request for Information (RFI) in the Federal Register that was shared widely via federal agencies and private organizations, Watson et al¹ invited individuals and caregivers of people with MCC as well as clinicians, researchers/academics, and organizations who provided care for or sought to improve care for individuals living with or at risk for MCC to participate in a questionnaire.¹ The 58 respondents included clinicians, researchers, patients, caregivers, and representatives of payer, health system or practice, advocacy, professional, nonprofit, and industry organizations. Respondents included older adults, adults with disabilities, caregivers for children with medical complexities, and low-income families. Researchers and organization spokespersons were overrepresented relative to individuals living with MCC.

While the small, select sample of individuals who responded to the RFI limits the ability to assess the relative importance and comprehensiveness of the results, the findings shine a light on the disconnect between the design of health care and the needs of most of its recipients. Examples of problems reported included suboptimal quality of care (eg, inadequate access, fragmented care, avoidable utilization), lack of person-centered care (eg, neglected social needs, language and cultural barriers, insufficient evidence to guide treatment), scant support of multidisciplinary team–based and coordinated care (eg, poor behavioral health integration, unsatisfactory collaboration across specialties, poor linkages to social and community services), inadequate attention to functional decline, disease-focused rather than patient-focused care, time pressures for clinicians, insufficient and misaligned payment, and inequities in resource distribution. Among the solutions proposed were paying for all members of the multidisciplinary teams and including patients and caregivers as members of the team; moving from a disease-centric to a patient goal–focused approach to decision-making and care; expanding digital health technologies (eg, interoperable and integrated systems, shared electronic care plans across sites, hybrid in-person and virtual care delivery that engages patients at home, easy patient and caregiver access to patients’ health data, and evidence-informed decision tools appropriate for persons with MCC available at point of care); using value-based payment models that incentivize goal-concordant, integrated, and team-based care; and implementing meaningful person-centered quality metrics that prioritize outcomes that matter most to people living with MCC, especially longitudinal outcomes as opposed to short-term utilization measures.

None of the problems or solutions proposed are new; all have been identified and written about previously.^3-5 Lack of novelty is not a weakness of the study. Rather, the findings by Watson et al¹ underscore the large chasm between current health care and the needs of its recipients. Despite the preponderance of multimorbidity, health care research, training, decision-making, quality assessment, and payment remain blindly focused on single diseases.

The lack of novelty in the findings in the study by Watson et al¹ suggests that the problem is not identifying what changes are needed, but how to bring them about. Even the broad and heterogeneous nature of populations affected by MCC paradoxically impedes the policies recommended to improve their care. Well-defined and well-funded single-condition advocacy groups with a concise “ask” have a great advantage in lobbying and influencing policy. Had the RFI been about interventions for Parkinson disease, one of the examples cited by Watson et al,¹ the number of responses would likely have been much greater than 58. Perhaps through conditioning, patients are as likely as their clinicians and payers to think about their diseases in isolation rather than considering the accumulated effect of multiple conditions on their quality of life, symptom burden, function, and survival. Ironically, the care sought for one of their conditions may be detrimental to their overall health and life priorities.

The aspirational goal is the evolution of research, training, practice, quality measurement, and payment to focus on what matters most to each patient with MCC. While scrapping the current structure and starting over may seem the only solution, this is hardly viable, particularly given the vested interests of many entities in the status quo. Public demand, evidence, and quality and payment metrics are all dependent on each other to drive change. The task seems quixotic, but there are touchpoints that might ignite transformation.

Because persons with MCC vary in their health goals and priorities, reframing the aim of health care from treating diseases in isolation to treating each person’s specific health priorities seems foundational. Settings where the financial incentives already align is a good place to start. The Centers for Medicare & Medicaid Services should support care models, perhaps within Medicare or Medicaid managed care plans, focused on ascertaining the priority outcomes of individuals with MCC and aligning care with these priorities. Demonstrating the value of this approach may drive payers to reconsider the siloed, disease-based, fee-for-service payment structure. The electronic care planning process being studied by the Agency for Healthcare Research and Quality could inform these efforts.² Watson et al¹ called out the 4Ms framework (ie, what matters, medication, mentation, mobility) for age-friendly care that centers clinical decisions on a patient’s goals and what matters most as a model for how health systems can move to the whole-individual approach needed for persons with MCC.^1,6

Efforts to focus health care on outcomes that matter to individuals should incentivize research organizations, particularly the National Institutes of Health, to move from a primarily siloed disease- and organ-based approach to investigating what happens, and what works, at the whole-person level. The study of MCC remains a negligible percentage of the National Institutes of Health research budget and a largely marginalized topic. Research involving representative samples based on age, ethnicity, race, and functional status is needed to identify the health-related and social interventions that should populate person-centered shared care plans. It is encouraging that there is Congressional interest in fostering a whole-individual across the lifespan approach across all institutes and centers.⁷ The more we focus health professional training and decision-making on the whole person, the more demand there will be for research to inform this practice, setting up a positive feedback loop toward appropriate care. Finally, quality and payment metrics focused on what matters to the individual will both encourage, and result from, a push to whole-person care. These metrics are under the purview of the federal government, including Centers for Medicare & Medicaid Services and the US Department of Veterans Affairs, highlighting their pivotal role in driving appropriate health care.

Published: October 17, 2024. doi:10.1001/jamanetworkopen.2024.39837

Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2024 Ouellet GM et al. JAMA Network Open.

Corresponding Author: Mary Tinetti, MD, Department of Medicine, Yale University School of Medicine, 333 Cedar St, PO Box 208025, New Haven, CT 06520 (mary.tinetti@yale.edu).

Conflict of Interest Disclosures: None reported.