Person-Centered Care Planning for People Living With or at Risk for Multiple Chronic Conditions

Key Points

Question  What do persons seeking care and their caregivers, health care practitioners, professional and nonprofit associations, and health care organizations believe are innovative approaches and challenges to implementing person-centered care planning (PCCP) for people living with or at risk for multiple chronic conditions?

Findings  In this qualitative study including 58 respondents, 9 themes were identified through a thematic analysis of responses to the Agency for Healthcare Research and Quality’s Request for Information. Themes described key components of PCCP for multiple chronic conditions and challenges and strategies to overcome them, including multidisciplinary teams, digital health technologies, workflow changes, payment policies, and goal alignment.

Meaning  These findings suggest that despite barriers to implementing PCCP, there is much opportunity to transform care delivery by amplifying and coordinating current efforts.

Importance  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. Person-centered care planning (PCCP) is an approach to provide comprehensive care that is responsive to the individual to improve health outcomes and increase value.

Objective  To examine strategies used to provide PCCP for people living with or at risk for MCC, as well as facilitators and barriers to implementation.

Design, Setting, and Participants  This qualitative study uses thematic analysis of responses from a Request for Information (RFI) published in the Federal Register soliciting input on PCCP, posted by the Agency for Healthcare Research and Quality (AHRQ) in 2022. The RFI was available for public comment from September 16, 2022, to November 15, 2022. Responses were analyzed between January 2023 and February 2024. Respondents were individuals and organizations who identify as, provide care for, or seek to improve care for individuals living with or at risk for MCC. Some responses represent multiple individuals.

Main Outcomes and Measures  Qualitative themes and subthemes of the RFI responses, developed using thematic analysis through inductive and deductive coding of the open-text responses.

Results  There were a total of 58 respondents, including clinicians, researchers, patients, caregivers, and representatives from health care payer, practitioner, health system, advocacy, professional, and supporting nonprofit and industry organizations. Researchers identified 9 themes: (1) suboptimal quality of care; (2) person-centered, goal-concordant care; (3) multidisciplinary team–based care and care coordination; (4) prevention across the life course; (5) digital health solutions; (6) workflow; (7) education and self-management support; (8) payment; and (9) achieving community, health system, and payer goals.

Conclusions and Relevance  In this qualitative study of PCCP for people living with or at risk for MCC, challenges to widescale adoption of PCCP were identified along with strategies to address these challenges, including the alignment of payment, policy support, culture change, adoption of meaningful measures, and the need for evidence on strategies to scale and spread PCCP. Insights gained from this analysis can inform research priorities and implementation efforts to advance PCCP as an integral component of routine care.

People living with multiple chronic conditions (MCC), the most common chronic condition seen in clinical practice, often receive fragmented care focused on treating multiple individual conditions rather than whole-person care consistent with their priorities and circumstances, resulting in suboptimal health outcomes and avoidable adverse events.^1,2 There is an urgent need to improve care delivery for this diverse, heterogeneous, growing, and high-cost population. Through extensive stakeholder consultation and literature review, the Agency for Healthcare Research and Quality (AHRQ) identified person-centered care planning (PCCP) as central to improving the quality and outcomes of MCC care. PCCP, the process of developing a holistic plan of care addressing the needs of the whole person in the context of their life, may occur through team-based collaboration between clinicians, patients, and patients’ broader care networks toward the coordinated identification, treatment, and management of physical and behavioral health conditions, while also addressing social determinants of health.^3-5 Patients engage in shared decision-making with clinicians and care team members to develop an individualized care plan aligned with their preferences and goals.^6-8

Comprehensive, longitudinal PCCP can improve health care quality and value for people living with or at risk for MCC by decreasing care fragmentation, increasing access to preventive services,^9-11 reducing unnecessary hospital and emergency service utilization,^12,13 and improving patient experience.¹¹ While organizations that provide certain Medicare and Medicaid postacute and long-term care services are statutorily required to create care plans^14,15 and care plans have been required in Medicaid managed care and some Centers for Medicare & Medicaid Innovation (CMMI) demonstrations,^16-18 barriers to its routine use in practice are many.¹⁹

Clinicians and health care organizations are developing innovative approaches to providing PCCP to patients with MCC, overcoming barriers to implementation. However, their experience is not always published in the academic or gray literature. To inform its programmatic work and that of its federal partners, AHRQ released a Request for Information (RFI) in the Federal Register on PCCP for MCC to solicit comment on the current state of comprehensive, longitudinal PCCP for people at risk for or living with MCC across care settings (eg, health systems, primary and other ambulatory care, hospitals, home care), including existing models of PCCP and barriers and facilitators to implementation.²⁰ The RFI also sought comment on innovative models of care, approaches, promising strategies, and solutions to enable clinicians and practices to routinely engage in PCCP.²⁰ We qualitatively analyzed these responses to inform future work and support the increased uptake and scale of PCCP.

This qualitative study was determined to be exempt from human participants review and informed consent by AHRQ’s Human Protections Administrator because it does not constitute human participants research as defined by 45 CFR 46. This report aligns with the Standards for Reporting Qualitative Research (SRQR) reporting guideline.

The RFI was posted in the Federal Register on September 16, 2022. It included 27 questions developed by AHRQ with input from other agencies within the Department of Health and Human Services.²⁰ The RFI announcement was shared widely via AHRQ and partnering agencies’ email listservs and websites, as well as the websites of private sector organizations. Representatives of diverse perspectives, including persons living with MCC and their caregivers, clinicians and other health care workers, professional societies, health systems, payers, human service and community organizations, and information technology professionals and vendors were encouraged to respond to the RFI via email by November 15, 2022. Respondents were instructed to answer questions that were applicable to their work or experience, and to contribute any additional relevant information that was not directly addressed in the RFI.

Our research team, including health services researchers with qualitative and quantitative expertise and clinicians specialized in primary care and aging, conducted a qualitative thematic analysis of open-text responses to identify prominent topical categories and overarching themes. Our process, modified from the framework by Braun and Clarke,^21-23 included data familiarization, inductive and deductive coding, theme generation, theme development, theme consensus, and reporting findings.^21-23 This method is consistent with our goal to increase understanding of PCCP implementation to inform policy and practice.^22,24,25 After initial data familiarization, 1 author (B.W.) coded each response using codes identified a priori as well as new, open codes derived from the response data. Additional authors (A.B., A.E., and L.E.) created memorandums to document their observations, compare preliminary coding, and identify further codes. We refined the codebook in team meetings held throughout the coding process, adding definitions and sample quotes to further specify code meanings and reach agreement on code assignments. We then organized codes and corresponding quotations into topical and conceptual themes and subthemes. Using this complementary inductive/deductive approach ensured that codes and themes were informed by but not restricted to the content of the RFI questions. All authors were involved in discussions to develop, define, and refine the final themes and subthemes and to ensure accurate application to respondent quotes. This iterative process included more than 15 rounds of collective theme review and revision. We used NVivo software version 12.0 (QSR International), Excel spreadsheets version 2308 (Microsoft), and Word documents version 2308 (Microsoft) in the analysis. Responses were analyzed between January 2023 and February 2024.

A total of 58 respondents, including clinicians, researchers, patients, caregivers, and representatives from health care payer, practitioner, advocacy, professional, and supporting nonprofit and industry organizations responded to the RFI (Table 1). Respondents represented diverse populations, including older adults, adults with disabilities, caregivers of children with medical complexities, and low-income families. Aggregated responses totaled approximately 87 000 words, with variation in length and format among responses. No respondent answered all 27 questions; respondents addressed the questions that were most relevant to them and their expertise and/or provided comment. We identified 9 themes and 52 subthemes. Themes with definitions and subthemes are listed in the Box and subthemes with representative quotes are presented in Table 2.

Box Section Ref ID

Respondents expressed concern about the quality of care provided. Individuals living with MCC and family members described difficulties accessing needed services, including specialty consultations and long-term care services and supports. Some respondents reported being treated unfairly by health care practitioners or receiving inadequate treatment. Clinicians and health care practitioners identified systemic issues within the US health care system—particularly care fragmentation across specialties and settings, limited community-based resources to address social determinants of health, inadequate practice improvement support for clinicians, and delays in implementation of evidence-based practices—limiting care options and negatively impacting the comprehensiveness of care. Respondents pointed to suboptimal health outcomes, avoidable hospitalizations, and preventable health care costs as major consequences of the current state of care and primary motivators for pursuing PCCP. Respondents largely viewed PCCP as a tool for improving quality of care for people living with MCC (Table 2).

Respondents expressed the need to shift from problem-oriented to person-centered care to achieve better MCC outcomes and described characteristics of person-centered approaches. Respondents across stakeholder groups identified goal concordance as a core characteristic: care should be tailored to the specific needs and goals of the patient and their families. Shared decision-making, through which clinicians share information and make clinical decisions collaboratively with patients and their caregivers, was articulated as integral to goal concordance. Respondents emphasized the importance of meeting patients where they are, both physically and figuratively, to facilitate access to information and services. Whenever possible, strategies for providing information and services should prioritize patient accessibility over system convenience (Table 2).

Respondents overwhelmingly expressed the need for systemic cultural change within the health care system to support the implementation of person-centered, goal-concordant care. They highlighted the importance of addressing social needs, describing how financial stability, secure housing, and social connectedness improve chronic disease management and increase value. Expanded access to effective home- and community-based services is needed. They stressed that language and cultural differences should be recognized and accommodated by care team members in a way that centers patients and families. Respondents expressed the importance of strengthening the evidence base to support clinical decision-making for care planning (Table 2).

Respondents described multidisciplinary team–based care and care coordination as central to PCCP. They noted that person-centered care approaches require investment in the health care workforce to increase numbers and practitioner education across care disciplines in needed competencies. Respondents stressed the importance of including individuals with lived experience on the care team. Health care workers from the same communities as their patients can share valuable experiential knowledge of local community resources. They emphasized that patients and caregivers should be treated as essential members of the multidisciplinary team and collaborate with clinical team members as active care partners (Table 2).

Respondents expressed that behavioral health integration and collaboration across specialties are necessary to effectively coordinate care across multidisciplinary teams. Facilitating linkages to social and community services is critically important. Respondents identified these areas of care coordination as vital for maintaining continuity and improving quality of care during transitions across settings and levels of care (Table 2).

Respondents emphasized the importance of preventing MCC across the life course, including primary, secondary, and tertiary prevention, and the importance of preventing functional decline among those living with MCC. Investment in prevention effort provides value through improvement in health and functional status. Respondents noted that prevention strategies help optimize functional status by enhancing existing skills and/or modifying the environment. Transitioning from the current disease-centered focus to one that centers patients’ goals was deemed essential to personalizing prevention (Table 2).

Respondents highlighted the role of technology in personalizing care and the importance of prioritizing user experience in the development of digital tools. Many stressed that care plans including critical patient information should reside in interoperable and integrated systems, which can be accomplished using shared electronic care plans. Furthermore, patients and caregivers should be able to easily access patients’ health data. Clinicians and researchers relayed the value of evidence-informed decision tools available at the point of care delivery to address the complexity of care planning and the need for evidence to support decision-making. Respondents from health systems reported that remote digital monitoring has revolutionized their delivery of person-centered MCC care, facilitating access and improving patient experience (Table 2).

Respondents expressed frustration with existing care delivery workflows. They recommended redesigning or replacing current tools, practices, and technology to better enable person-centered and comprehensive shared care planning. They underscored the time pressures clinicians face in traditional care delivery models and the increased efficiency of adapting workflows to more seamlessly centralize and track health information related to patient goals. Respondents recommended digital health solutions, including implementing hybrid in-person and virtual care delivery that engages patients at home via telehealth. Interoperability of patient data across care team members and between behavioral and primary care practitioners was underscored as essential. Data sharing between external health care and social service practitioners was acknowledged as challenging but necessary. The value of routinely assessing patients’ health and social risk and using risk stratification to equitably and efficiently allocate clinician time and resources among patients was emphasized (Table 2).

Respondents reported the need to educate clinicians, patients, and caregivers in PCCP and the need for patients and caregivers to understand the role and benefits of comprehensive care planning. Many expressed the need for robust clinician education about the role of PCCP and how to deliver person-centered care. Others highlighted the unique challenges and need for education for those living with and caring for individuals with intellectual and developmental disabilities. Patient empowerment and self-management support were described as essential components of sustainable solutions (Table 2).

Respondents underscored that current payment models conflict with patient and clinician goals, presenting a major barrier to widespread adoption of PCCP. Addressing insufficient payment by assuring adequate and aligned funding could increase value by improving quality of care and outcomes. Evidence for the effectiveness of value-based payment models, such as pay-for-performance programs or shared-savings arrangements that incentivize value over volume of care provided, is needed and could foster wider adoption of PCCP. Respondents indicated that multidisciplinary team members, including care coordinators, clinical pharmacists, and community health workers, are not adequately compensated in current payment models. They described inadequate payment as a pervasive financial barrier to adopting PCCP within primary care practices, especially among small independent practices. Respondents identified integrated PCCP models as promising models for sustainably funding longitudinal PCCP. Some recommended out-of-pocket costs for care management services be eliminated to reduce patient-facing financial barriers to care (Table 2).

Respondents suggested several approaches for achieving stakeholder goals to successfully implement PCCP within primary care and other ambulatory settings, including developing innovative models in lower-resourced settings, including community health centers, rather than adapting models from highly resourced systems. 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, were communicated as key to incentivizing efforts to drive PCCP implementation. Respondents expressed the need for person-centered models to capture data to continuously improve person-centered care delivery and document return on investment (Table 2).

This qualitative study identified 9 themes for strategies for, as well as facilitators and barriers to implementation of PCCP: (1) suboptimal quality of care; (2) person-centered, goal-concordant care; (3) multidisciplinary team–based care and care coordination; (4) prevention across the life course; (5) digital health solutions; (6) workflow; (7) education and self-management support; (8) payment; and (9) achieving community, health system, and payer goals. These themes identified reforms needed and components of care delivery models to support PCCP. The many barriers to implementing PCCP include time constraints, inadequate payment, and workforce availability and competencies. Promising solutions were identified including, multidisciplinary teams, digital health technologies, workflow changes, payment policies, goal alignment, and opportunities for aligning practice, policy, and payment to advance PCCP. Understanding how to effectively provide comprehensive, person-centered care is foundational to improving health outcomes for people living with or at risk for MCC and increasing value in care delivery. AHRQ’s RFI elicited robust responses from diverse health care sectors, researchers, clinicians, community organizations, patients, and caregivers who consistently articulated that traditional models for delivering care are not effective in optimizing health and functioning.

Respondents and stakeholder groups used varied terminology, theoretical frameworks, and references to define PCCP from their position on the care team or their discipline. Despite differences, there was substantial thematic overlap across responses. Respondents emphasized the importance of holistic, goal-concordant, integrated, and team-based care; how such care is supported by processes and technologies that facilitate communication and data sharing across the care team; and how such care is sustained through value-based payment models. These themes align with evidence-based models for providing care to people with MCC and/or complex care needs, reflecting the prioritization of patient goals in goal-oriented care,²⁶ collaborative communication and data sharing between clinicians and patients central to shared decision-making,^27-29 and comprehensive coordination of medical and social services in patient-centered medical homes.³⁰

Coordination and communication across care teams are essential to addressing a patient’s multiple, complex, and sometimes contradicting needs.^31,32 For example, a person with heart failure may be told by a cardiologist to restrict fluids, but by a nephrologist to assure adequate hydration. A patient with Parkinson disease and their care partners may need to weigh the tradeoffs of a medication change that improves mobility but exacerbates dementia behavioral symptoms. This can be confusing and distressing to patients and their caregivers. Recommendations are not always made with patient’s goals at the center. The implementation of the 4M’s (What Matters, Medication, Mentation, Mobility) framework for age-friendly health systems aligns with PCCP, centering patient’s goals and emphasizing that clinical decisions require consideration of what matters most to the patient.³³ Patient Priorities Care has developed tools to facilitate goal identification by interdisciplinary teams to foster PCCP.^34,35 Practice and policy changes to deliver PCCP can benefit health systems users by supporting the caring function of health care.³⁶

To our knowledge, this is the first report on the role of PCCP, solutions for care delivery, and facilitators and barriers to implementation from diverse disciplinary and geographic perspectives. This analysis was undertaken to inform AHRQ’s efforts toward building the evidence base for more widespread adoption and scale of PCCP as a component of routine practice.³⁷ This priority emerged from extensive consultations and a 2020 summit where PCCP was identified as a lynchpin for care transformation to improve MCC care delivery.³⁸ The summit led to AHRQ’s MCC research agenda³⁷ and publications on PCCP in learning health systems,³⁹ digital health solutions,⁴⁰ and patient and family engagement.⁴¹ The results of these analyses are informing AHRQ’s priority setting, strategic planning, and funding announcement development. The Person-Centered Care Planning for Persons With Multiple Chronic Conditions initiative aims to identify innovative, feasible models of PCCP through national engagement of health system leaders, professional associations, policymakers, and a learning community of frontline health care staff, implementers, and researchers.^42,43 A 2023 roundtable of AHRQ partners from multiple sectors and disciplines identified many related efforts under way, albeit siloed, to improve MCC care and the enormous potential in aligning these efforts and shared learning.⁴⁴ AHRQ, together with the National Institute of Diabetes and Digestive and Kidney Diseases, developed an interoperable electronic care plan to support longitudinal comprehensive shared care planning, including clinician- and patient- and caregiver-facing Substitutable Medical Applications and Reusable Technologies on FHIR applications to facilitate PCCP, data aggregation across multiple electronic health records, and collection of data on health-related social needs, functional status, patient-reported outcomes, and goals.^45,46 This work advances Department of Health and Human Services and Biden Administration priorities of integrating health and social care and addressing the social determinants of health.^47-49

This study has some limitations. Respondents’ perspectives may not be representative of people lacking the technological access and time necessary to monitor and respond to the RFI. AHRQ received fewer and, on average, shorter responses from individual patients, family members, and caregivers than from clinicians, researchers, and organizations; thus, the perspectives from this important stakeholder group are comparatively underrepresented. However, the RFI was widely circulated through federal partners, networks, and social media and received a robust response. We were unable to probe responses. However, respondents were encouraged to provide all information they felt relevant, even if not directly solicited by the questions.

This qualitative study of individuals and organizations across the health care system found that challenges in advancing PCCP are substantial and require aligning payment, policy, culture change, along with evidence for models of care and implementation strategies for successful adoption. PCCP is central to health care redesign to deliver person-centered care. Insights gained from this analysis are informing research priorities, dissemination, and implementation efforts to transform care for people living with and at risk for MCC.

Accepted for Publication: August 13, 2024.

Published: October 17, 2024. doi:10.1001/jamanetworkopen.2024.39851

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

Corresponding Author: Brittany N. Watson, MD, MPH, Department of Family and Community Medicine, Wake Forest University School of Medicine, Atrium Health Wake Forest Baptist, 1920 W First St, Winston-Salem, NC 27104 (brnwatso@wakehealth.edu).

Author Contributions: Drs Bierman and Watson had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Watson, Eden, Carney, Bierman.

Acquisition, analysis, or interpretation of data: Estenson, Eden, Gerstein, Dotson, Milnes, Bierman.

Drafting of the manuscript: Watson, Estenson, Eden, Dotson, Bierman.

Critical review of the manuscript for important intellectual content: All authors.

Statistical analysis: Watson.

Administrative, technical, or material support: Estenson, Eden, Gerstein, Carney, Milnes.

Supervision: Eden, Bierman.

Conflict of Interest Disclosures: Drs Eden, Gerstein, Dotson, and Bierman were employed by the Agency for Healthcare Research and Quality (AHRQ) during the conduct of this study. Dr Carney reported receiving personal fees from Haven Behavioral Health as a board member outside the submitted work. No other disclosures were reported.

Data Sharing Statement: See the Supplement.