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The National Academies of Sciences, Engineering, and Medicine (NASEM) defines high-quality primary care as “continuous, person-centered, relationship-based care.”¹⁷ Person-centered care is based on the patient’s unique needs, preferences, and values,²⁶ and focuses on the individual within the broader context of their community, family, and life experience. This type of comprehensive, whole-person care requires clinicians to actively involve patients and their families as partners in clinical decision making and to recognize the value of patient self-management—particularly for those with chronic conditions. Providing person-centered care is based on improved communication and trust between clinicians and patients and can lead to improved patient outcomes, increased patient and clinician satisfaction, and even decreased healthcare costs.²⁷ In addition, the inclusion of patients and families as partners in primary care research is important for identifying which health outcomes and research questions are most relevant and responsive to the needs of those receiving the care. 

This section includes grants, initiatives, and resources with a focus on person-centered care in primary care settings.

Grants

Across AHRQ primary care research grants with active funding in FYs 2023 and 2024, ten focus mainly on person-centered care. This included six R01 grants (Research Projects), two R18 grants (Research Demonstration and Dissemination Projects), and two R21 grants (Exploratory/Development Grants). 

An additional 13 grants include some focus on person-centered care and are described in other topic area sections, including four in Health Disparities, three in Practice and Quality Improvement, two in Patient Safety, two in Digital Healthcare, one in Healthcare Systems and Infrastructure, and one in Behavioral Health and Substance Use Disorders. 

We summarize the ten grants focused on person-centered care below, organized by subtopic. The subtopics are: 

• Patient-Facing Tools for Health Management and Decision Support.
• Approaches to Increase Patient-Centered Care.
• Family Decision Making in Telehealth.

Patient-Facing Tools for Health Management and Decision Support 

Six studies focused on developing, improving, measuring, or evaluating tools to help patients manage and make decisions about their care.

(R01) 
PI: Jennifer M. Elston Lafata 
Organization: University of North Carolina – Chapel Hill 
Grant Start Date: September 1, 2021 
Develops valid patient-reported shared decision-making support (SDM-S) measures that incorporate four distinct SDM phases: choice awareness, consideration of alternatives/preferences, choice-making, and choice implementation. Tests the measures in four contexts (lung cancer screening, colorectal cancer screening, rectal cancer treatment, and prostate cancer treatment) to evaluate performance and acceptability among primary care and oncology patients.

(R01) 
PIs: Antoinette M. Schoenthaler; Devin M. Mann 
Organization: New York University School of Medicine 
Grant Start Date: July 1, 2023 
Builds on an existing evaluation of an innovative mobile health patient-reported-outcomes tool for managing type 2 diabetes (iMatter). Uses a theory-driven and user-centered design approach across two phases: (1) a formative phase using a mixed-methods approach to enhance and user-test iMatter2 in primary care practices serving minority populations; and (2) a clinical trial phase, to test the effectiveness of iMatter2 verses usual care on HbA1c reduction at 12 months among 353 patients with uncontrolled type 2 diabetes.

Learn more about this study in a recent Digital Healthcare Research webinar: .

(R21) 
PIs: Zhe He; Mia Liza A. Lustria 
Organization: Florida State University 
Grant Start Date: April 1, 2024 
Develops and evaluates LabGenie: a web-based patient engagement tool to help patients understand and act upon their lab results. LabGenie is particularly geared towards older adults, who face unique barriers to patient portals including low health literacy and technology skills. The project examines the potential impact of Lab Genie on clinical workflow and burden in primary care settings.

Learn more about this study in a Primary Care Research Profile: An AI-Powered Tool to Support Older Adults in Understanding Lab Test Results (LabGenie) (PDF, 284 KB)

(R21) 
PI: Min Soon Kim 
Organization: University of Missouri – Columbia  
Grant Start Date: April 1, 2022 
Develops an educational decision aid that enables older adults with diabetes to choose a strategy for diabetes self-management education and support that has the best potential to achieve clinical and health benefits for them. Refines and tests the decision aid for feasibility in primary care and diabetes specialty care settings and for preliminary outcomes.

(R01) 
PI: Clarisa Wen-Ling Hsu  
Organization: Kaiser Foundation Research Institute  
Grant Start Date: June 1, 2022 
Investigates the experiences of patients and primary care clinicians who have discontinued long-term opioid therapy (LTOT). Develops a patient-centered decision aid to improve patient-provider communication around discontinuation of LTOT and pilot tests the decision aid with patients.

(R01) 
PI: Ian Hargraves 
Organization: Mayo Clinic Rochester 
Grant Start Date: September 30, 2022 
Develops a measure of shared decision making (SDM) occurrence and estimates the measure's reliability and validity. This new measure of SDM occurrence can help uncover how frequently SDM techniques are used in the care of patients with chronic conditions in primary care or other settings, and test associations between SDM and behavioral and physical health outcomes.

Approaches to Increase Patient-Centered Care 

Three studies reviewed different approaches to increase patient-centered care.

(R01) 
PI: Alexander H. Krist 
Organization: Virginia Commonwealth University  
Grant Start Date: March 5, 2019 
Implements and tests an enhanced care planning program to help patients manage multiple chronic conditions. Includes the use of an enhanced care planning tool in primary care to screen patients for health behavior, mental health, and social needs. Working with a navigator, patients help prioritize their needs, create a care plan, and write a narrative to guide care; and then connects patients to needed resources in the community. Implemented a clinician-level randomized controlled trial to study how primary care clinicians participate in models for connecting patients to needed community services, and measures whether it improves their health outcomes.

Learn more about this study in a recent NCEPCR webinar: Research on Person-Centered Care.

(R18) 
PI: Manuel E. Jimenez 
Organization: Rutgers Biomedical and Health Sciences 
Grant Start Date: September 30, 2021   
Tests an online family wellness program that uses anticipatory guidance on health topics important to school readiness (e.g., nutrition and physical activity) to introduce language and literacy skills to Latino dual language learners from families with a low income. Conducts a developmental evaluation to refine and optimize the program for implementation in primary care. Then, conducts a randomized control trial to test the effects of the program on child and parent outcomes, and a process evaluation to explore reach, implementation, and user experience.

(R18) 
PIs: Ramzi George Salloum; Christopher Albert Harle 
Organization: University of Florida 
Grant Start Date: September 13, 2021 
Develops and tests a clinical decision support tool to help primary care clinicians work with their patients to choose a pain treatment approach that best balances the potential risks and benefits for the individual patient. This tool helps to avoid inappropriate discontinuation of opioids for the patients for whom the benefits of opioids outweigh the risks.

Family Decision Making in Telehealth

One study compared engagement in family decision making in telehealth versus in-person primary care for children with chronic conditions. 

(R01) 
PI: Ellen A. Lipstein 
Organization: Cincinnati Children’s Hospital Medical Center 
Grant Start Date: September 30, 2022 
Aims to compare the telehealth and in-person decision-making processes and outcomes in pediatric primary care for children with chronic conditions. Uses a combination of family surveys, video recordings of healthcare visits, and qualitative interviews to understand experiences of decision-making during telehealth and in-person visits.

Learn more about this study in a NCEPCR webinar: Qualitative Methods Used in AHRQ-Funded Primary Care Research. 

Initiatives and Resources

In 2023 and 2024, ������Ƶreleased the updated Health Literacy Universal Precautions Toolkit and added an outpatient mental health survey to the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) surveys. ������’s materials on person-centered Care from FYs 2023 and 2024 that are primary care-relevant are described below. 

Person-Centered Preventive Healthcare: Gathering Stakeholder Input on Evidence and Implementation

������Ƶconvened a 25-member technical expert panel multiple times to advise on identifying high-quality clinical preventive services (such as vaccinations and screening tests) and delivering these services in ways that are person centered. 

This project (PDF, 430 KB) resulted in a series of reports: 

• Prioritizing Clinical Preventive Services (PDF, 1.5 MB) (and an Executive Summary [PDF, 505 KB]).
• Gathering Stakeholder Input on Evidence and Implementation (PDF, 1.4 MB) (and an Executive Summary [(PDF, 604 KB]).
• Reaching Adolescents to Deliver Preventive Services (PDF, 981 KB).
• Engaging in Challenging Conversations About Screening (PDF, 1.2 MB).

Health Literacy Universal Precautions Toolkit

������’s&�Բ�����;Health Literacy Universal Precautions Toolkit was updated to the third edition in 2024. The toolkit provides evidence-based guidance for clinicians about how they can help ensure their patients understand, and can act on, important health information and includes tools with concrete action items to support busy clinicians.

Consumer Assessment of Healthcare Providers and Systems (CAHPS®) 

������’s Consumer Assessment of Healthcare Providers and Systems (CAHPS®) surveys help to build an understanding of patients’ experience with healthcare to help ensure that care is safe and centered on patients’ needs. 

There are several CAHPS® surveys focused on different areas of care. In 2024, the CAHPS added an outpatient mental health survey. This survey asks adult patients to provide feedback on their experiences with mental health and substance use disorder services received in any outpatient setting, including primary care. In addition to other groups, clinicians and medical groups can use the results from this survey to identify strengths and weaknesses in service provision and delivery from the patient’s perspective. 

NCEPCR Webinar: Research on Person-Centered Care

NCEPCR hosted a webinar in June 2024 focused on person-centered research techniques, models, tools, and programs and their impact on patient health outcomes. Three ������Ƶgrantees presented their research about the associations between shared decision making and chronic care; how primary care clinicians participate in models for connecting patients to community services; and implementation of a scalable, person-centered chronic pain management program.