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For people with serious chronic conditions, healthcare that defaults to all available treatments without considering patient preferences risks harms that may exceed benefits. Advance care planning (ACP) has the potential to align healthcare with what is important to patients and maximize quality of life. While primary care is where most people receive most of their care, engaging patients in ACP is not routine in primary care given competing demands and limited resources. Primary care clinicians, patients, and families agree that it is preferred to make plans before there is a medical crisis. The research team's goal was to make ACP routine in primary care and to "move it upstream" so that it included improving the quality of the last years of life as well as respecting wishes for end of life care.

This study included a comparative effectiveness trial of team-based versus individual clinician-focused ACP in primary care practices. The research team adapted Ariadne Labs' Serious Illness Care Program (SICP) and aimed to determine if a team approach produces better patient outcomes and explore factors influencing implementation of ACP across practices.

Seven practice-based research networks (PBRNs) in the United States and Canada randomized their primary care practices to team-based or individual clinician-focused versions of SICP. Team members and clinicians completed training, and implementation was supported through practice facilitation. Consented patient participants completed a baseline survey after initial conversations and follow-up surveys at 6 and 12 months later. Forty practices (21 team, 19 clinician) completed training and referred patients to the study. Half of the practices were rural, 80 percent were family medicine, and 33 percent were medical residency training sites. 535 healthcare staff completed training. Both arms trained primary care providers; the team arm also trained nurses, medical assistants, and other roles. 1,321 patients and care partners were referred; and 917 consented and were enrolled (455 from team practices, 462 from clinician). Data from 802 patients were included in the primary analyses. Qualitative implementation data was collected during practice facilitation and from practice interviews.

This collection includes quantitative data collected from primary care practices (DS1) and team members and clinicians (DS2) from study sites located in the United States.

A learning health system, or LHS, is a health system that constantly looks for new ways to improve patient care. At an LHS, doctors and other hospital staff use learning activities to improve care, put what they've learned into practice, and share findings with other hospitals. Activities may include doing studies that compare treatments to see which one works better for which patients.

Governance refers to the way LHSs oversee learning activities. Governance includes people, committees, and policies that regulate learning activities. Including patients as partners in governance helps make sure learning activities address what's important to patients and protect patients' rights and interests. But LHSs don't always include patients in governance.

In this study, the research team wanted to learn how LHSs include patient partners in governance. The team interviewed patients and health system leaders to answer this question.

Sometimes a study can get better results using data from different sites. In these cases, researchers may want to share patient data, including personal and private information such as dates of birth and addresses. However, researchers may not want to share data across sites because of worries about patient privacy. Some statistical methods can change patients' sensitive individual data into summary data that hides individuals' personal information. These privacy-protecting methods, or PPMs, make it safe to share data across sites. But researchers don't know if PPMs produce accurate results.

In this study, the research team compared combinations of PPMs with methods that use patients' individual data.

To access the methods, software, and R package, please visit the distributed GitHub.

Patient-centered outcomes research, or PCOR, is a type of research that focuses on patient values and needs. PCOR includes patients in many parts of the research process, including helping to plan and conduct the study. Institutional Review Boards, or IRBs, oversee research studies to make sure patients participating in a study are protected from harm. But current IRB guidance may not address ethical issues that arise when patients are involved in other roles.

In this study, the research team created recommendations to guide IRB oversight of PCOR studies.