Fall 2025 Issue

Recentering Care
By Jennifer Lutz
For The Record
Vol. 37 No. 4 P. 22

Patient-centered care has the potential to transform care and treatment.

How is patient-centered care defined? It’s a work in progress. There are plenty of studies and various forms of evidence that highlight the importance of integrating patients and their caregivers into the care model, but there’s no singular definition. A 2022 umbrella review, “Defining and Implementing Patient-Centered Care: An Umbrella Review,” identified 10 definitions with common elements that included patient empowerment, patient individuality, and a biopsychosocial approach. Implementation factors focused on communication, training health care providers, and organizational structure.

“Person-centered care should be patient driven and individualized based on the patient’s needs, goals, and preferences,” says Danielle DeSouza, MSc, PhD, spokesperson for the New York Department of Health. “In addition to addressing medical issues the patient is experiencing, patient-centered care also takes into consideration social, emotional, and financial factors that can affect the patient’s health and wellbeing. In long term care, this means that services should be planned with the recipient based on what they wish to achieve, related to their needs reflected in their assessment (such as assistance with activities of daily living).”

Cristina Perez, senior director of patient experience at Moffitt Cancer Center, says, “For us, patient-centered care means treating the patients and family as partners, not just patients. The guiding philosophy is ‘Nothing about me without me.’ Care decisions should always include the patient’s voice because cancer affects the whole person, not just the disease, and that’s something that we promote.”

A 2024 statement from the American Heart Association (AHA) recognized patient-centered care as a goal of high-quality health care. Acknowledging that there is no standard, agreed-upon definition, the AHA noted a conceptual agreement about the core pillars: being respectful to the patient’s beliefs and values, providing information that empowers the patient and caregivers to make decisions, integrating family and loved ones into care, considering physical discomfort and emotional support, ensuring access to care, and developing an active partnership among the patient, family, and health care team. The AHA also emphasized remembering the social context that the patient lives within. Additionally, the statement emphasized that patient care is not patient-led and must be based on evidence.

Shared Decision Making
Across the board, shared decision making is an important part of patient-centered care. “Person-centered care involves listening to the individual and connecting the services and supports to their needs, goals, and preferences, rather than assuming what they may need based on the care planner’s experience or own ideas or, worse, telling them what they need without listening to what they want and how they prefer to receive this assistance,” DeSouza says.

According to the AHA, “Shared decision-making leads to increased patient knowledge of their cardiovascular conditions and self-efficacy, reduced decisional conflict, improved patient-reported health outcomes, and better use of health care resources in cardiovascular disease.” Shared decision making is so important that it is required for reimbursement coverage by CMS for certain cardiovascular procedures.

A 2025 survey, “The 2025 Healthcare Consumer,” found that over half of respondents used the internet to self-diagnose a medical condition. When providers and networks educate patients, the results tend to improve. One comprehensive literature review found that patient education programs have a positive influence on health outcomes, leading to improved quality of life, reduced hospitalizations, and better disease management.

Patient education is a key aspect of successful shared decision making. Given the limited time most providers can spend with patients, several tools can be used to educate patients and caregivers. Pamphlets, interactive materials, websites, and support groups could help in the education process. In some cases, patient decision aids may be used, walking patients through their options and keeping them informed along the way. Strategies such as using plain language, visual aids, interactive tools, and incorporating cultural considerations can enhance the impact of patient education on health outcomes.

Collaborative Care
Collaborative care is crucial to achieving the best outcomes, particularly in relation to chronic conditions, which afflict over two-thirds of Americans. It has long been established, for example, that socioeconomic factors play a significant role in health outcomes. Beyond diet and exercise, factors such as the nearness of a grocery store, neighborhood safety, and social conditions influence patient compliance, care decisions, and recovery. Patient-centered care can take a collaborative approach and include family members, community leaders, faith leaders, and dietitians.

Collaborative care also considers the patient in the context and limitations of their daily life. “We [often] think that we need to resort to the highest priced test every time someone comes to us,” says Dasa Gangadhar, MD, MHL, senior associate dean for curriculum, clinical medicine, and graduate medical education at Kansas Health Science University. “We have to listen to them, first. We have to know their vulnerabilities, and I think we need to listen to those things before defaulting to another test or another medication.

“We need to look at teaching students in a more clinically oriented way,” he adds. “We need to be able to teach students’ preferred practice patterns, and we need to be able to teach them the empathy side of medicine. We can’t keep teaching them the minor details that can easily be accessed on a phone. The days of memorizing a long list of things are gone. We need to teach students how to think, how to analyze. We need to stop teaching memorization.”

Does It Work?
An important tenet of patient-centered care is putting both doctor and patient on the same page. Patient perceptions of their own health have been shown to have an association with health outcomes. Yet, a study of 33 US family physicians and 506 of their patients found that the physicians and patients agreed on the state of the patient’s health less than 40% of the time, with patients often estimating their health lower than the physician did. When the patient is an active part of the process, and their entire health is considered, both doctor and patient can make better decisions.

A systematic review and meta-analysis reviewing patient-centered care in people with type 2 diabetes found that patient-centered models effectively improved self-management in improving glycemic control. Another, more general systematic review, focused on patient perception. The review found that clinical results were mixed: some showed improvement with patient-centered care and others showed no difference. Still, self-management and positive feelings from patients were significantly improved.

According to DeSouza, measuring success is strongly linked to the patient experience. “Measuring how successful we are in meeting the goals of person-centered care can be achieved through surveys asking individuals if they played a deciding role in planning their services, if the care planner listened to their goals and preferences in designing their person-centered care plan, and if their outcomes reflect this experience,” she says.

Ensuring this success can come through various means. Perez suggests setting up an advisory council, if possible. “For other centers, my first recommendation would be to definitely take the time to listen to the patient. It’s great if they have an advisory council, and if not, they can start one; it’s a great way to get feedback,” she says. “Something we do is a patient shift report, and these reports invite the patients and their caregivers to be part of these conversations, build trust, ensure transparency, and allow the family to share their voice in real-time care decisions. It changes the patient experience and keeps us informed beyond the clinical aspects of what’s going on with the patient.”

In practice, the use of Patient Family Advisory Councils has benefited both patients and hospital systems. The widespread implementation of these advisory councils in Massachusetts has proven to be more cost-effective, in many cases, than relying on professionals. “There are things that a patient and caregiver would see that a doctor or administrator wouldn’t,” Perez says. “We use the voice of the patients in everything we do, whether it’s signs [from the patient] or treatment program design.”

Patient-centered care also lets doctors know what patients value, saving time and money. In a study about factors that influence choice of lumpectomy vs mastectomy, when patients understood that lumpectomy could result in higher rates of recurrence and more chemotherapy in the future, they were significantly less likely than providers to consider keeping their breast as a top goal when choosing surgery (7% vs 71%, 95% confidence interval of the difference: − 92, − 37).

The Way Forward
Patient-centered care is better for patients, physicians, and costs, yet it’s seldom implemented on a large scale. Implementing it well also means accounting for equity issues. Feedback from patients is one way to improve health care equity and is a key part of the patient-centered care model. “In any medical setting, everyone has to show that they want patients and families to be respected and informed, and I think that all begins with actively listening,” Perez says.

A perspective published by the National Academy of Medicine recommends a patient-centered and equity-based institutional performance assessment or monitoring system. It also means having education materials in multiple languages and at an appropriate reading level.

Another important factor, when looking at the whole patient, is separating the social implications of race and gender from biological ones. “Patient-centered care challenges all health care professionals and support workers to see a three-dimensional person and the impact of their environment, rather than a woman with mobility issues, a man with a heart condition, or a child with anxiety, for instance,” DeSouza says.

To do that, many professionals need more time with patients, something they seldom get. “I will tell you that the vast majority of patients will give us their diagnosis; we just need to listen. The history is so valuable, we have to be able to spend the time and do it,” Gangadhar says.

There are new challenges on the horizon, however. Upcoming cuts to Medicare are likely to result in less accessible care and less time for clinicians with patients.

Few models will be perfect, but that doesn’t mean the premise is wasted. “What we hear from patients is that it’s a different experience because we really see them as partners,” Perez says.

That level of partnership is at the heart of the patient-centered model. When providers treat patients and caregivers as part of the solution, they tend to do better; both provider and patient are better informed.

The American Medical Association recently published the AMA STEPS Forward program for centers that want to incorporate patient-centered care models. The program “offers proven approaches on how to improve communications with patients, uncover risk factors that may be contributing to poor health, collaborate with your colleagues in other specialties, and enhance transitions of care.”

The American Academy of Family Physicians offers 14 tips for improving the patient experience. The document offers suggestions on how to maximize time with a patient, such as beginning the visit with an open-ended question and personally calling the patient with results. These little touches can help put the patient at the center of care.

And if in doubt, it’s good to follow the guiding principle at Moffit: Nothing about me without me. “Care decisions should always include the patient’s voice because it affects the whole person, not just the disease, and that’s something that we promote,” Perez says.

— Jennifer Lutz is a freelance journalist who covers health, politics, and travel. Her writing has appeared in The Guardian, The Independent, New York Daily News, BuzzFeed Politics, The Local ES, HealthCentral, Today’s Geriatric Medicine, Medscape, Pittsburgh City Paper, and more.