It is now recognized that high-quality primary care is "continuous, person-centered, relationship-based care."27 Person-centered care builds on the earlier concept of patient-centered care—where patients and their families are partners in medical decision making, and care is personalized based on the patient’s unique needs, preferences, and values.28 Person-centered care goes one step further, by putting the focus on the individual in the full context of their community, family, and lived experience—rather than solely on their role as a patient receiving healthcare.
To broadly implement person-centered care, shifts are needed in the organization, financing, and delivery of care to support the provision of comprehensive, whole person care rather than disease focused care.2 Providing person-centered care also requires strong and ongoing partnerships between primary care, public health, and communities27 (see the section on Public Health and Community Integration as well). Engaging patients and families as partners in research is essential for helping to identify the research questions and health outcomes that are most relevant to them, and to redesign care to be responsive to the needs of those receiving the care.
This section of the report includes a summary of AHRQ’s grants and a resource with a main focus on person-centered care.
Grants with a focus on health equity are indicated with this icon.
Grants
There were 18 AHRQ primary care grants focused on person-centered care that were actively funded during FYs 2021 and 2022. This included eight R01s (Research Projects), four R18s (Research Demonstration and Dissemination Projects), two U18s (Research Demonstration/Cooperative Agreement), two R21s (Exploratory/Developmental Research Grants), one R03 (Small Research Grant), and one K01 (Research Career Program). There were an additional 18 grants with some focus on person- centered care, which are described in other sections of this report, including Digital Healthcare (5), Healthcare Systems and Infrastructure (4), Behavioral Health and Substance Abuse Disorders (4), Practice and Quality Improvement (3), Health Equity (1), and Public Health and Community Integration (1).
Below are tables, organized by subtopics, which include short summaries of the 18 studies focused mainly on person-centered care. Subtopics include clinical decision supports for person-centered care, decision aids, measures of shared-decision making, improving decision-making processes, patient-facing EHR- integrated tools, programs to improve person-centeredness, and other person-centered approaches to improving health.
Clinical Decision Supports for Person-Centered Care
Three grants focus on developing clinical decision support tools to help providers engage in person- centered care.
Scaling Interoperable Clinical Decision Support for Patient-Centered Chronic Pain Care (R18) |
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PIs: Christopher Albert Harle; George Ramzi Solloum Organization: University of Florida; School of Medicine 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. |
Clinical Decision Support for Collaborative Diet Goal Setting in Primary Care (R21) |
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PI: Marissa Burgermaster Organization: University of Texas at Austin; School of Medicine, Public Health, and Preventive Medicine Refines an existing health information technology tool that provides clinicians with data-driven guidance for personalized and collaborative diet goal setting. The research team will pilot test the tool with primary care providers in federally qualified health centers, with the goal of implementing clinical workflows to serve patients experiencing health disparities. |
Scalable Decision Support and Shared Decision Making for Lung Cancer Screening (R18) |
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PI: Kensaku Kawamoto Organization: University of Utah; School of Medicine Adapts an existing tool, Decision Precision+, to analyze and synthesize relevant risk data and support shared decision-making related to lung cancer screening. This tool presents individually tailored information on the potential benefits and harms of screening, allowing patients and their primary care physicians to make informed and patient-centered decisions on whether to screen for lung cancer through low-dose computerized tomography testing. |
Decision Aids
Two grants develop decision aids to support decision-making and promote person-centered care.
Patient Perspectives on Prescription Opioid Discontinuation: Understanding and Promoting Safe Transitions (R01) |
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PI: Clarissa Wen-Ling Hsu Organization: Kaiser Foundation Research Institute Investigates the experiences of patients and providers who have discontinued opioids for long term opioid therapy (LTOT). It develops a patient decision aid to support patients when discontinuing LTOT and pilot tests the decision aid with patients. |
Patient-Centered Diabetes Education as an Integral Part of an Electronic Clinic Note Using the SEE-Diabetes Modules (R21) |
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PI: Min Soon Kim Organization: University of Missouri—Columbia; School of Medicine Develops an educational decision aid that enables older adults with diabetes to choose a diabetes self-management education and support strategy with the best potential to achieve clinical and health benefits for them. The project also refines and tests the decision aid for feasibility in primary care and diabetes specialty care settings, and for preliminary outcomes. |
Measures of Shared-Decision Making
Two grants work to develop measures of shared decision-making (SDM).
SDMo—a Measure of the Occurrence of SDM in the Care of Patients with Chronic Conditions (R01) |
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PI: Ian Hargraves Organization: Mayo Clinic Rochester 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, and test associations between SDM and behavioral and physical health outcomes. |
Development of a Shared Decision Making Support (SDM-S) Measure for Use with Team-based Care (R01) |
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PIs: Jennifer M. Elston Lafata Organization: University of North Carolina Chapel Hill; School of Pharmacy Develops valid patient-reported shared decision-making support (SDM-S) measures that incorporates four distinct SDM phases: choice awareness, consideration of alternatives/preferences, choice-making, and choice implementation. The researchers will then test the measures in four cancer care 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. |
Improving Decision-Making Processes
Three grants implement interventions to improve decision-making processes.
Validation of a Framework for Shared Decision-Making in Pediatrics (R03) |
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PI: Douglas J. Opel Organization: Seattle Children’s Hospital Defines a framework for implementing SDM in pediatrics. The framework includes four steps: medical reasonableness, benefit-burden, preference sensitivity, and calibration. This grant assesses the applicability of the pediatric SDM framework on a range of medical decisions and child ages through observations of clinical encounters and post-encounter interviews with clinicians, parents, and adolescent patients. The research team will also assess the face and content validity of the framework through focus groups. |
Comparing Family Decision Making Engagement in Telehealth Versus In-person Primary Care for Children with Chronic Conditions (R01) |
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PI: Ellen A. Lipstein Organization: Cincinnati Children’s Hospital Medical Center Aims to compare the telehealth and in-person decision-making processes and outcomes in pediatric primary care for children with chronic conditions. This grant used 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 recent NCEPCR webinar: Qualitative Methods Used in AHRQ Funded Primary Care Research. |
Integrating Costs into Shared Decision-Making for Heart Failure with Reduced Ejection Fraction (R01) |
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PI: Neal Workman Dicket Organization: Emory University; School of Medicine, Internal Medicine Investigates strategies to improve communication and shared decision-making related to a costly but medically effective drug to treat chronic heart failure with reduced ejection fraction. The grant explores how frequently cost is addressed in patient-provider encounters, examines the impact of different ways of framing information about the drug and its cost, and tests an intervention focused on integrating patient-specific costs into clinical encounters. |
Patient-Facing EHR-Integrated Tools
Three grants develop patient-facing, EHR-integrated tools to support patients reporting outcomes or completing screenings.
i-Matter: Investigating an mHealth Texting Tool for Embedding Patient-Reported Data into Diabetes Management (R01) |
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PIs: Antoinette M. Schoenthaler; Devin M. Mann Organization: New York University Grossman School of Medicine; School of Medicine, Internal Medicine Evaluates the useability and efficacy of an innovative mobile health tool for managing diabetes care. The tool uses text-messaging to collect and share patient-reported outcomes and sends patients feedback and motivational messages based on the information they share. The platform also creates dynamic data visualizations of the patient’s data, which is integrated into the electronic health record, and can be reviewed by their primary care clinicians during and between visits. |
Mobile Patient-Reported Outcomes for Value and Effectiveness (mPROVE) (U18) |
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PI: Jane Jih Organization: University of California, San Francisco; School of Medicine, Internal Medicine Develops a mobile app for patient-reported outcomes and shared decision-making, integrates it with the EHR, and conducts a hybrid implementation-effectiveness trial to study its impact on quality of care and implementation outcomes among primary care patients. |
Patient Outcomes Reporting for Timely Assessments of Life with Depression: PORTAL-Depression (U18) |
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PI: Neda Laiteerapong Organization: University of Chicago; School of Medicine, Internal Medicine Implements the Computerized Adaptive Test for Mental Health (CAT-MH), a validated, adaptive test that measures depression symptoms through the patient portal and is integrated into the EHR. The study evaluates the effectiveness of conducting depression screening through the patient portal versus in-person collection during primary care visits. The researchers aim to assess whether using MyChart increases the number of uses of the MAT-HC screener by primary care patients, and whether use of the integrated MAT-HC screener in MyChart results in higher rates of remission in patients with major depressive disorder. |
Programs To Improve Person-Centeredness
Three grants implement programs to improve person-centeredness.
PI: Manuel E. Jimenez Organization: RBHS-Robert Wood Johnson Medical School Tests an online family wellness program that uses anticipatory guidance on health topics important to school readiness (for example, nutrition and physical activity) to introduce language and literacy skills to Latino dual language learners from families with a low income. The research team will first conduct a developmental evaluation to refine and optimize the program for implementation in primary care. They will then conduct 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. |
Addressing Opioid Use Disorder in Older Adults Through Primary Care Innovation (OUD-PCI) (R18) |
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PIs: Steven Allen Crawford; Alexandra Lee Jennings; Zsolt J. Nagykaldi Organization: University of Oklahoma Health Sciences Center Implements a multi-faceted person-centered and scalable chronic management program in primary care practices. The program was systematically tailored to older adults and those with functional disabilities or increased social risks with the goal of increasing functioning and decreasing pain and adverse events. |
Enhanced Care Planning and Clinical-Community Linkages to Comprehensively Address the Basic Needs of Patients with Multiple Chronic Conditions (R01) |
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PI: Alexander H. Krist Organization: Virginia Commonwealth University; School of Medicine, Medicine Implements and tests an enhanced care planning program to help patients manage multiple chronic conditions. The intervention 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. The research team 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. |
Other Person-Centered Approaches to Improving Health
Two grants investigate other person-centered approaches to improving health.
PI: Heather Angier Organization: Oregon Health & Science University; School of Medicine, Family Medicine Identifies which parental factors (such their own health care receipt and burden of disease) are most strongly associated with children receiving recommended preventive health care (including recommended well-child visits and routine childhood vaccinations). The research team also explores how social determinants of health influence healthcare utilization for the whole family. |
Prioritizing Quality Improvement for the Treatment of Psychiatric Disturbances Following Traumatic Brain Injury (K01) |
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PI: Jennifer S. Albrecht Organization: University of Maryland Baltimore; School of Medicine, Public Health & Preventive Medicine Assesses treatment options for patients with traumatic brain injury (TBI) who are experiencing psychiatric disturbances such as depression, anxiety, and post-traumatic stress disorder. The grant examines barriers and facilitators to treatments across patient groups, quantifies disparities in treatment patterns associated with psychiatric disturbances following TBI, and develops a priority list of patient-selected strategies to overcome barriers to the receipt of treatment for psychiatric disturbances following TBI. This project has implications for the care of patients with TBI in a primary care setting. |
Initiatives and Resources
AHRQ’s Consumer Assessment of Healthcare Providers and Systems (CAHPS®) surveys help to build an understanding of patients’ experience with healthcare as part of a larger overall effort to ensure that care is safe and centered on patients’ needs.29 There are several CAHPS® surveys focused on different areas of care. The CAHPS® Clinician & Group Survey, which was updated in 2021, is focused on primary and specialty care settings and is described below.
The CAHPS Clinician & Group Survey, asks patients to report on their experiences with providers and staff in primary and specialty care settings. Questions included in the survey are related to care accessibility, provider communication, care coordination, and interactions with staff. This survey was updated in 2021 to allow respondents to report about in-person, phone, and video visits.30
The results from CAHPS Clinician & Group Survey can be used by medical practices, health systems, State agencies, and others for the following purposes:31
- To help medical practices and health systems identify where practice improvement activities are needed, and evaluate the impact of existing improvement efforts,
- To give consumers information they can use to compare individual clinicians, medical practices, or medical groups, and choose where to get their care, and
- To allow State agencies or health systems to monitor the performance of physician practices, and reward those who provide high-quality care.
In addition to sharing the versions of the surveys themselves, AHRQ shares additional questions that can be added to the survey, including open ended questions; information and tools for administering the survey; and tools for comparing the survey data to aggregated results, improving patient experiences, and sharing CAHPS scores with patients.