Results Summary
PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.
Background
Research has found that individuals and whole populations who see primary care physicians often have better health, even though primary care doctors have less experience treating specific diseases than specialty care doctors. Primary care also costs less than specialty care. Researchers want to understand why primary care leads to better health at a lower cost.
Project Purpose
The researchers in the study worked with patients and providers to better understand why primary care is so valuable and to develop a computer program to test different ways of organizing primary care to achieve the best outcomes for individuals and communities. The researchers thought that these new ways of organizing primary care could help guide future research, healthcare policy, and decisions about how to deliver care in primary care practices.
Methods
Health experts and patients worked together to create a computer program that compares ways of providing primary care.
The researchers held group discussions with 76 people from different healthcare settings. These settings included community health centers and the Safety Net Providers Strategic Alliance, a research network that includes federally qualified health centers, free clinics, and health clinics for the homeless. The group discussions included people from different races, people with more than one health condition, and people with different income levels. The researchers also held discussions with a variety of doctors. The researchers asked all participants about their experiences providing or receiving care.
The researchers then invited nine patients, five family doctors, and one nurse practitioner from the discussion groups to take part in developing the computer program.
Over eight discussion sessions, the participants created and refined the computer program, which focused on actual care experiences of patients and providers. Important medical research about primary and specialty care also influenced the program.
Findings
This project brought together patients and providers to discuss their experiences with primary care and to create a computer program based on those experiences. The final computer program could look at different ways of providing primary care to achieve the best outcomes for patients at risk for sudden illness, life-changing illness, long-term illness, and mental illness, and communities.
In the program, which reflected patient and provider experiences, primary care had the following characteristics:
- Primary care is not as good as specialty care in treating a single disease, but it can treat multiple diseases at once.
- Primary care can help patients prevent future illness, improve their health behaviors, and refer them to the specialty care they may need.
- Having relationships with primary care providers can make patients seek the care they need sooner.
Researchers used the final program to conduct a series of tests to understand the impact of primary care, they found the following:
- Primary care that includes all of the characteristics listed above results in better patient health than when primary care does not have all those characteristics.
- Primary care was most helpful for patients who have lower incomes, less access to care, and those who have worse health.
- People in neighborhoods with limited resources had more doctor visits overall when primary care included all of the above characteristics. However, these visits were more often for disease prevention and less often to treat illness.
Limitations
The study involved a small number of participants who were handpicked by the researchers. A different group of participants may have pointed out other ways primary care can make a difference in health outcomes. A different group might also have built the program differently.
Conclusions
The study showed that it is possible to engage people with different backgrounds in a group process to create a computer program that allows users to compare different ways of providing patient care and to see how these ways affect health outcomes. This type of comparison is not easy to do using other methods.
Sharing the Results
The research team has published the results of this study and provided a version of the computer program that people can use on their own.
Professional Abstract
PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.
Background
Research has found that primary care is often connected to better health for individuals and whole populations, even though primary care doctors have less disease-specific expertise than specialists. Primary care also costs less than specialty care and helps provide better care for the whole population. Researchers call this “the paradox of primary care” -- when primary care leads to better health results for persons and populations even though it does not focus on the latest treatment of individual diseases. Researchers want to understand what causes this paradox.
Project Purpose
The study aimed to
- Capture the wisdom and insights of diverse patients and primary care clinicians to develop candidate explanations for the paradox of primary care.
- Develop and apply an iterative, participatory group model-building process to produce and refine agent-based models of the paradox of primary care.
- Use this novel group modeling method to test hypotheses comparing different ways of organizing primary care to optimize patient-centered and population-important outcomes.
- Disseminate the novel methodology and models to inform future PCOR research, health care policy, and patient and practice decisions regarding care.
Study Design
Diverse stakeholders worked together to build, refine, and calibrate an agent-based computer simulation model that allows the user to compare primary care that involves multiple mechanisms hypothesized to influence patient-centered outcomes with primary care that does not include these mechanisms.
Patients, Interventions, Settings, and Outcomes
Diverse stakeholders from varied community, practice, and healthcare system settings, including community health centers in the Safety Net Providers’ Strategic Alliance, were invited to participate in focus groups. Participants included people with multiple health conditions or low socioeconomic status and racial and ethnic minorities. Clinicians from multiple practice-based research networks were invited to participate in similar focus groups. Then, using a maximum diversity sampling strategy, articulate and interested members of the focus groups were invited to participate in eight ongoing group model-building sessions.
Data Sources
The computer simulation model was informed by the lived experiences of diverse patients, caregivers, and clinicians, who worked with an academic team that created the models and brought them back for ongoing refinement in eight group model-building sessions. The models were further informed by stylized facts from relevant research literature.
Quality of Data and Analysis
The quality and trustworthiness of the data and analyses were enhanced by an iterative, participatory process that included: paying attention to multiple viewpoints and information sources, calibrating the model to reflect both the lived experience of stakeholders and information from relevant research literature, considering alternative explanations, and using a diverse team to conduct the analysis.
Findings
This project developed new methods to translate stakeholder experiences into the creation and refinement of agent-based computer simulation models in participatory group model-building sessions. These methods involved using stick figure diagrams, 2 x 2 matrices, a graphical computer interface as “boundary objects” to bridge participant experience, and an evolving computer simulation model developed from sharing that experience.
The researchers designed a model in which patients are at risk for acute illness, acute life-changing illness, chronic illness, and mental illness. Patients have changeable health behaviors and care-seeking tendencies that relate to their living in advantaged or disadvantaged neighborhoods. There are two types of care available to patients: primary and specialty. Primary care in the model is less effective in treating single diseases than specialty care, but it has the ability to treat multiple diseases at once. Primary care also can provide disease prevention visits, help patients to improve their health behaviors, provide referrals to specialty care, and develop relationships with patients that cause them to lower their threshold for seeking care. In a model run with primary care features turned off, primary care patients have poorer health. In a model run with all primary care features turned on, their conjoint effect leads to better health. The primary care effect is particularly pronounced for patients who are socioeconomically disadvantaged and patients with multiple chronic conditions. Primary care leads to more total health care visits, due to more disease prevention visits, but also to reduced illness visits among people in disadvantaged neighborhoods.
Limitations
A different group of participants may have identified other ways primary care can make a difference in health outcomes or built the model differently.
Conclusions
Involving diverse stakeholders in a participatory group model-building process, the researchers developed a computer simulation model to test complex comparative effectiveness research questions that are not easily answered by other means.
The resulting model provides insights into possible mechanisms for the paradox of primary care and demonstrates how participatory group model building can be used to evaluate hypotheses about the behavior of complex systems such as primary health care and population health.