Moving Person‐Centered Care Planning From Theory Into Practice: Patient Perspectives

ABSTRACT

Introduction

Persons with multiple chronic conditions often receive care from a complicated network of multiple providers across multiple health systems unique to their conditions, needs, available resources, and insurance. Patients must navigate this healthcare system, which is a difficult and complicated process with just one provider or system, let alone multiple. Developing new solutions to overcome the systemic challenges within healthcare systems to provide high‐quality, comprehensive, person‐centered care for persons living with, or at risk for, multiple chronic conditions is critical. Person‐centered care is needed, not only because it is the right and just approach to supporting patients, but because of the profound implications of the increasing prevalence of multiple chronic conditions on healthcare costs, caregiver burden, workforce productivity, and the broader social fabric. In this commentary, we present patient perspectives on a project that brought together diverse groups to identify potential solutions to challenges in implementation of person‐centered care.

Methods

Patients, families, and family caregivers are essential to the design and implementation of person‐centered care planning for people with multiple chronic conditions. The Agency for Healthcare Research and Quality (AHRQ) funded a project aimed at compiling best practices and discussing barriers. The project used a learning system approach to engage policy experts, clinicians, researchers, and persons with multiple chronic conditions, their families, and family caregivers. Four main activities included a technical expert panel, an environmental scan, a partner roundtable, and a learning collaborative. An in‐person/hybrid summit held in March 2025 summarized activities and provided a forum for presentations to share activities of the project and conduct small group discussions on select topics.

Results/Framework

We present patient narratives to complement content provided by the partner roundtables and other AHRQ‐funded activities that provided foundational knowledge and diverse perspectives to promote person‐centered care planning as standard practice for persons with multiple chronic conditions. Although many challenges to implementation of person‐centered care were identified and discussed, learning from successful models and customization of models using components as appropriate may help overcome barriers. In particular, the need for culture change, use of meaningful measures, scalability, and other concepts must be addressed. Alignment of payment structures and policy support will be essential to ensuring that person‐centered care can be advanced as an integral component of routine care.

Conclusion/Next Steps

Multiple challenges to adoption of person‐centered care planning have been identified. Future work by multidisciplinary teams (that must include patients, caregivers, policymakers, and clinicians) is needed to develop evidence‐based feasible solutions to overcome these barriers in ways that respect the values and preferences of patients, families, and caregivers.

1. Introduction

As of 2023, 51.4% of US adults reported having multiple chronic conditions (MCC), representing some 130 million individuals [1]. While the burden of MCC has generally been found among older adults, recent analyses show that the prevalence of MCC has increased significantly over the last decade among young adults [1]. Today, it is estimated that approximately 6 in 10 young, 8 in 10 midlife, and 9 in 10 older US adults report having one or more chronic conditions, while projections predict that the prevalence and incidence of MCC will increase over time [1, 2].

Person‐centered care has been defined as “integrated health care services delivered in a setting and manner that is responsive to individuals and their goals, values and preferences, in a system that supports good provider–patient communication and empowers individuals receiving care and providers to make effective care plans together” [3]. This approach aims to empower patients, enhance patient satisfaction, and strengthen relationships between patients and their healthcare teams. The person‐centered collaborative care model builds on a long history of work that changed diabetes management from a clinician‐led approach to a patient‐centered focus on behavior change and quality of life [4, 5]. Person‐centered care was also shaped by a minimally disruptive approach to patients with MCC, which aims to achieve patient goals for life and health while minimizing the possible treatment burden on patients [6].

The definition of a person‐centered care plan for this project, supported by the Agency for Healthcare Research and Quality (AHRQ), was a single, shared record of care resulting from a person‐centered care planning process which [7],

• is accessible to people seeking care and their caregivers

• puts the person's goals at the center of decision‐making

• is holistic, including physical and behavioral health and clinical and nonclinical information (e.g., social determinants of health, lifestyle elements including diet, exercise, sleep)

• follows the person through both high need episodes and periods of health improvement and maintenance

• allows care team coordination.

As noted in a 2022 request for information from ARHQ, ideally, the care plan should [7]:

• include all conditions including physical and behavioral health conditions

• include any external factors/conditions (e.g., everyday stressors) that would impact whole person care

• facilitate screening for and/or diagnosing coexisting conditions that impact care management and outcomes, as well as social risks and supports

• support evidence‐based care

• include an individual's goals and preferences

• be dynamic to allow flexibility to update care plans as needed

Person‐centered care planning aims to implement integrated and coordinated care across multiple health systems, clinicians, and care settings. This integration of care is especially important for people with multiple chronic and complex conditions. Despite a variety of successful models of person‐centered care planning for those with MCC used in specific healthcare systems, widespread use and implementation in the United States has not been realized. Thus, use of person‐centered care planning remains an unmet need for most patients.

2. The AHRQ Project: The Person‐Centered Care Planning for Persons With MCC (PCCP4 Project)

Through the Accelerating Change and Transformation in Organizations and Networks IV (ACTION IV) mechanism, the AHRQ funded a project to explore best practices for the design and implementation of person‐centered care planning for people with MCC [8, 9, 10, 11, 12, 13]. The project engaged a diverse group of partners in a multifaceted approach to advance the goals of person‐centered care planning. Collaboration in a learning health system approach, working with patients, clinicians, payors, implementation professionals, and policymakers, sought to identify best practices and strategies to identify factors in successful implementation and improve models of person‐centered care planning. Here we describe the project along with insights from participants.

The goal of the project was to create a roadmap with best practices for designing and implementing person‐centered care planning across diverse health systems and settings that requires active engagement of experts, stakeholders, practitioners, frontline implementers, researchers, and persons, families, and caregivers. Information gathered through this engagement provides knowledge to help advance the long‐term goal of promoting and implementing person‐centered care planning as standard practice for persons with MCC.

The major components of the AHRQ project were a technical expert panel to guide the project development, an environmental scan [9], a partner roundtable [10], and a learning collaborative [11] followed by a summit [8]. Initial activities centered on identifying successful models of person‐centered care, concurrent with the environmental scan to compile literature, including evidence‐based strategies, experiences of implementation across a broad range of settings, and resources needed to help ensure success. Of particular interest were models that achieved the goals of improving:

• patient health

• efficiency

• experience of patients

• experience of care teams.

• equity

Major topics of each of the four partner roundtables included [10]:

1. Kickoff/introduction

2. Models of person‐centered care planning.

3. Policy, payment, and cost

4. Technology, research, and next steps

The project culminated in an in‐person/virtual hybrid summit that included presentations from a wide variety of patients, caregivers, payors, clinicians, researchers, and health system decision makers [8, 10]. Patient stories presented at the summit, including a presentation by a patient on dialysis and patient participation in small group discussions, highlighted the changes needed to truly implement person‐centered care planning [10].

Of the five areas of focus for the project, this commentary discusses the need to improve patient experiences. Through patient narratives, we give examples of patient experiences and how person‐centered care could improve these experiences. Authors C.S. and M.R. participated in the AHRQ partner roundtable and contributed to the narratives for this publication provided below.

3. Narrative #1: Person‐Centered Care and Impact on Patient Overall Health and Well‐Being

This narrative is from a patient who attended the AHRQ summit representing patients with MCC. She has 17 diagnoses and over 40 years of patient experience, including several years not following a doctor‐prescribed care plan. This contributed to the development of half a dozen complications of Type 1 diabetes, exactly the type of situation the summit sought to prevent.

This patient brought her narrative to the summit to illustrate its goals and to give insight into the patient mindset and unstated psychological roadblocks that stand in the way of reaching those goals. Understanding what can happen when a patient is not involved in the development of their care plan is essential in creating the impetus for bringing patients into the discussion and decision‐making.

3.1. Patient Narrative Example: Diabetes Care Before and After Working With a Clinician Who Implemented Person‐Centered Care

I have taken different paths at different points in my patient life. Not one of the ones that excluded my input led to positive outcomes, and some actually damaged me.

When I was 14, I had a doctor who sent me out of the room to discuss my treatment for Type 1 (T1) diabetes with my parents. He alienated me, took away my agency, and wouldn't listen when I said the nutrition plan was too much. Because he refused to incorporate my input and my parents were new to diabetes and didn't know better, he wouldn't change the plan, and my parents made me follow it closely. I gained 60 pounds in six months, began associating insulin with weight gain, and promptly stopped taking it. In a nutshell, that doctor treated me right into an eating disorder called diabulimia.

It was a form of passive suicide. Because I felt trapped, unheard, and they were really good at using threats and fear tactics as treatment methods. “If you don't shape up and do X, you are going to die of a stroke before you turn 20.” Welcome to the birth of what is‐the‐point‐ism.

I was lucky that I stumbled into a patient‐centered doctor as I was coming out of college. He let me ask as many questions as I needed to, accepted when I said no and helped me find alternative treatments, and allowed me to take back control of my conditions. I drove and he navigated until I needed a break. Then he drove and we chose the route together.

4. Key Learnings From Situations When the Patient Is Left Out of the Loop

When a clinician chooses a treatment path without input from the patient (i.e., paternalistic model) [14], several things can happen: (1) the patient follows the care plan without thinking about it or understanding it, in which case the patient is disconnected from their condition and why the plan might help; (2) the patient follows the plan but resents it, allowing dissatisfaction and anger to build; (3) the patient says they will follow the plan but does not because they do not like being told what to do; or (4) the patient simply shuts down [15, 16].

5. Patient Narrative #2: Composite Experience of Multiple Interfaces With the Healthcare System

This narrative is a composite of experiences observed from supporting friends, family, and other loved ones, as well as working in the maternal child health space from the lens of community health practice and programming. The narrative, developed by author M.R., illustrates a c. Barriers to care that include challenges, lack of plain language on discharge instructions, issues arranging transportation to medical appointments, and difficulties navigating insurance coverage and preauthorization requirements.

5.1. Patient Narrative Example: Postpartum Woman Diagnosed With Severe Preeclampsia Experiencing Hypertension and Headaches

Tasha left the hospital on a Wednesday morning with a newborn, a blood pressure cuff that never made it into her bag, and discharge papers that read like a second language. Her diagnosis was severe preeclampsia. The plan on paper was straightforward: check her blood pressure twice a day, call if symptoms worsened, and follow up in 1 week with obstetrics (OB), and in 2 weeks with primary care. On the bus home, the bottle of labetalol, used to manage postpartum hypertension, rattled in the diaper bag next to the formula samples a nurse had tucked in “just in case.”

By Thursday, the pharmacy messages started, and her second medication required prior authorization. She called the clinic to discuss her medicines, waited on hold, then lost the call when the home visiting nurse arrived. The nurse could come for a home visit next week, but transportation to future in‐person appointments was up to Tasha to arrange. She texted the number from the discharge sheet to ask, “Is a headache normal?” The automated reply said someone would get back to her within 48 h.

On Friday night, a pounding behind her eyes woke her. The numbers on the blood pressure machine with the borrowed cuff from a neighbor blinked 172/110, but she was not sure she was using it right. Her partner had just started a new shift with no paid time off and a supervisor watching the clock. Tasha called her mom to come watch the baby and took a rideshare to the emergency room. Triage asked who her primary care doctor was; she said, “I think I'm still trying to get in.”

In the emergency department (ED), she told her story three times: to the nurse, the resident, and the attending physician. Her chart showed the hospital stay but not the discharge plan. The ED note labeled her as “nonadherent” and suggested “postpartum migraine,” a common but less dangerous explanation that can distract from evaluating postpartum hypertension. After IV meds and 2 h under humming lights, her blood pressure dropped. She was discharged with instructions to “follow up with PCP.” No appointment was made. The rideshare home cost the grocery money.

Over the next month, the cascade continued with missed well‐baby visits because of her rescheduled OB appointment, anxiety that swelled every time the cuff squeezed, and a supervisor who said, “We need reliability, Tasha,” when she asked for a half‐day. She rationed her pills to stretch them until the insurance authorization cleared. Her breast milk supply dipped. On Sundays, she sat at the kitchen table with appointment slips, school lunch forms for her older son, and a pad of paper where she wrote, “What's the plan? Who's in charge of me?”

The consequence was not just one readmission avoided or not. It was trust thinning to a thread. It was hypertension becoming a story about moral failure instead of a condition with a care plan. It was the baby's first month becoming a ledger of phone trees, “MyChart” messages, and bills.

6. Key Learnings on How Person‐Centered Care Could Be Proactively Incorporated to Improve Patient Experiences

The case described above identifies several challenges that could have been addressed at various time points using person‐centered strategies. Based on the authors' experiences, examples of person‐centered care components (ideally delivered as a one‐page list, not a pamphlet) that would have changed the outcomes include:

• Warm handoff before discharge. A brief video call with her community health worker and/or clinic nurse would help to establish a trusted first point of contact, confirm goals, and support alignment of the plan before the patient's discharge. A video call with virtual face‐to‐face communication is one way to build relationships between patients and their healthcare providers.

• One shared, living care plan. A single plan that starts with the patient's goals (e.g., “walk the baby daily,” “keep my job”), lists each medication with a plain‐language “why,” and includes exact follow‐up dates scheduled before discharge would cut administrative burden, make it easier to resolve conflicts (work/childcare/transport), and increase the likelihood the patient can follow the plan they co‐created.

• Pharmacy workflow. Ensuring that the patient had medications in hand at the time of discharge, prior authorization initiated during the time as an inpatient, and a 90‐day supply of medications when clinically appropriate would help remove potential barriers to taking medications as prescribed.

• Connected home monitoring and rapid response. Remote blood pressure monitoring with simple text check‐ins (e.g., “Reply with your number; we'll call if it's high”) and a 24/7 callback that actually returns calls within hours would help her feel supported, generate usable data, enable timely medication adjustments, and trigger escalation when needed.

• Social needs treated as clinical risks. Proactively arranging transportation and childcare (potentially including vouchers to help cover costs for transportation and/or childcare) as part of the care plan—not afterthoughts—would reduce missed visits and prevent avoidable ED use.

7. Discussion

The delivery of high‐quality, effective, person‐centered care that is well‐aligned with the aims of person‐centered care planning is a goal of healthcare systems. Successful implementation of person‐centered care must be supported by payment structures that facilitate this kind of care, data driven by meaningful measures, policy changes, leadership buy‐in and commitment, and culture change. Patients, families, and communities must be involved in codesigning approaches to person‐centered care planning [17]. Patients, families, and care partners could drive demand for person‐centered care planning by expecting to receive this care from their healthcare team. This involvement is critical to ensure that the care patients receive is aligned with their needs, preferences, and values.

Payors have a significant role in changing the current environment given that payment methods and policies could be adapted to incentivize care quality. Policymakers at federal and state agencies also play a role in developing policies to support and incentivize workforce, payment, Medicaid Access rules, appropriate patient‐centered primary care measures, technology to enable patient and family engagement, automated documentation, and value‐based payment infrastructure. Valued measures of success are needed to explore potential cost benefits of effective resource utilization that improves patient health and saves money in the long term.

Thus, collective efforts are needed to support change in health care that prioritizes patient‐centered approaches and enhances care coordination across the system.

8. Call for Action: A Patient's Perspective

The AHRQ Partner Roundtable project resulted in strong consensus that patient engagement is fundamental to implementing person‐centered care. Without thoughtful patient involvement, policies, payment models, and technology are enablers that lack meaning. Patients, families, and family caregivers can help drive person‐centered care by expecting this type of care and by engagement in expressing their needs, preferences, and values. Author (C.S.) advises patients with MCC to consider the following:

Think about your life and all that goes into it. All the things you want, all your dreams, the family you love, your hard work. Then think about your limitations. What is standing in the way of that life? Patients with MCC have several sets of extra roadblocks we have to manage, like a set of restrictive brackets we either have to accommodate or break through. And we can do that with help.

Now think about how you would feel if you went looking to break through your roadblocks to get closer to the life you want to build, and the person you chose cut you out of the discussion. They may or may not have any idea how far you have come or what you want to accomplish. They may or may not know what resources are available to you, including time, energy, and finances. But they are going to tell you what to do and, without knowing any better, you are going to think that is the only way. It is a perfect recipe for nonadherence, and with nonadherence comes a higher number of complications and diseases that get worse instead of staying stable. Which then come with higher costs and shorter lifespans. We can do better. We have the tools, we just need to use them.

9. Conclusions

Multiple barriers to fully adopting person‐centered care planning have been identified. Future work by multidisciplinary teams is needed to develop evidence‐based feasible solutions to overcome challenges in ways that respect the values and preferences of patients, families, and caregivers.

Funding

This work was funded through an ACTION IV Task Order issued by the Agency for Healthcare Research and Quality (75Q80120D00019/75Q80124F32002). The Wisconsin Research and Education Network (WREN) provided manuscript costs and in‐kind support for manuscript preparation.

Conflicts of Interest

The authors declare no conflicts of interest.

Data Availability Statement

Data sharing not applicable to this article as no datasets were generated or analysed during the current study.