Patient participation presents an opportunity to study a part of healthcare that is routinely expected of patients but has not been fully defined, taught, or measured as its own area of health behavior.

The Patient Better Project welcomes academic institutions interested in helping build the evidence base surrounding patient participation. Research may examine how patient participation is defined and measured, how participation skills are learned, whether those skills change over time, how they appear across different populations and care settings, and how participation relates to communication, care navigation, patient experience, health behaviors, and other measurable outcomes.

Examples of organizations in this field: Academic medical centers; schools of medicine, nursing, public health, pharmacy, psychology, and allied health; university health services and health policy research centers; and institutions such as Johns Hopkins University, Harvard University, the University of Michigan, Duke University, and The University of Texas institutions. These are examples of the types of academic organizations that may conduct relevant work and do not imply an existing partnership or affiliation with The Patient Better Project.

Collaboration with The Patient Better Project through investigator-led studies, student and faculty research, measurement development and validation, pilot studies, implementation research, dissertations, publications, or multidisciplinary research involving fields such as health services research, public health, behavioral science, health literacy, nursing, medicine, psychology, and healthcare administration.

The Patient Better Project can contribute an established patient-participation framework, educational intervention, defined patient-side activities, measurement methodology under development, and opportunities for real-world study. Academic partners bring the independent scientific expertise necessary to test, challenge, validate, and refine that work.

Why participate? Because this is an opportunity not simply to study another patient education program, but to help determine how patient participation itself can be scientifically understood, measured, and investigated.

Health services researchers examine how healthcare is organized, delivered, accessed, experienced, and used. Patient participation belongs within that conversation because healthcare delivery does not end with the actions of the healthcare professional or organization. Patients also carry information between encounters, communicate changes, coordinate across providers, manage instructions, prepare for appointments, and follow through with care outside the clinical setting.

Examples of organizations in this field: Academic health services research centers, health-system research institutes, health policy research organizations, AcademyHealth, and the Agency for Healthcare Research and Quality (AHRQ).

The Patient Better Project welcomes health services researchers interested in examining this patient-side contribution to healthcare delivery. Research can explore where patient participation affects the movement of information and care across the healthcare system, how participation varies among populations and settings, what barriers make participation more difficult, and whether structured patient education can strengthen specific participation behaviors.

Potential areas of study include care coordination, continuity of care, healthcare navigation, communication, access, utilization, patient experience, transitions of care, treatment follow-through, administrative burden, and the relationship between patient participation and the processes healthcare organizations already measure.

Health services researchers may collaborate with The Patient Better Project through observational studies, pilot studies, implementation research, comparative studies, mixed-methods research, secondary data analysis, real-world evaluation, measurement development, and studies examining Patient Better as an educational intervention within healthcare delivery.

The Patient Better Project can contribute a defined patient-participation framework, structured educational intervention, observable patient-side activities, measurement methodology under development, and opportunities for real-world investigation. Health services researchers bring the methodological expertise needed to determine where patient participation fits within healthcare delivery and how it can be studied alongside existing measures of access, quality, experience, utilization, and care processes.

Why participate? Because health services research has extensively studied what healthcare systems and professionals do. Patient participation creates an opportunity to more deliberately investigate the work occurring on the other side of healthcare delivery: what patients must understand, organize, communicate, manage, and carry forward for care to continue from one encounter to the next.

Examples of professionals and organizations in this field: Physicians and physician investigators; nurses and nurse researchers; nurse practitioners and physician associates; pharmacists; physical and occupational therapists; behavioral health professionals; care managers; clinical research professionals; academic medical centers; teaching hospitals; practice-based research networks; clinical research institutes; and professional research communities such as the Association of Clinical Research Professionals (ACRP) and Society of Clinical Research Associates (SOCRA). These are examples of the types of professionals and organizations that may conduct relevant work and do not imply an existing partnership or affiliation with The Patient Better Project.

Healthcare professionals are positioned to observe patient participation where it actually occurs: during the everyday delivery of care. They see what happens when patients arrive prepared or unprepared, bring accurate or incomplete information, understand or misunderstand instructions, ask questions, organize their health information, and attempt to carry a care plan forward after leaving the clinical encounter.

The Patient Better Project welcomes physicians, nurses, advanced practice providers, pharmacists, therapists, psychologists, social workers, care managers, and other licensed healthcare professionals interested in helping investigate patient participation in real-world clinical environments. We also welcome clinical investigators interested in designing and conducting studies that examine patient participation as a measurable component of healthcare delivery.

Research opportunities may examine how patient-participation behaviors appear during clinical encounters, whether structured education changes those behaviors, how healthcare professionals recognize and respond to different levels of patient participation, and how participation relates to communication, understanding, preparedness, care coordination, treatment follow-through, patient experience, and other measurable care processes and outcomes.

Healthcare professionals and clinical investigators may participate through investigator-initiated studies, practice-based research, observational studies, intervention studies, pilot programs, feasibility studies, implementation research, measurement and instrument validation, patient recruitment, clinical-site participation, qualitative interviews, case studies, and multidisciplinary research collaborations.

The Patient Better Project can contribute a defined patient-participation framework, structured educational intervention, observable patient-side activities, measurement methodology under development, research questions, and opportunities for real-world investigation. Healthcare professionals and clinical investigators contribute clinical expertise, direct observation of patient behavior, access to appropriate research environments and populations, and the scientific and practical insight needed to determine whether measures of patient participation reflect what actually occurs in healthcare.

Why participate? Because healthcare professionals routinely depend on patients to provide information, understand decisions, manage instructions, communicate changes, and continue care between encounters. Clinical research provides an opportunity to move those expectations beyond assumption and examine them systematically: what patients are being asked to do, what they are actually able to do, what can be taught, what can be measured, and what difference those activities may make.

Examples of organizations in this field: Health systems; hospitals and hospital networks; academic medical centers; multispecialty medical groups; independent physician practices; primary care practices; specialty practices; outpatient clinics; ambulatory care organizations; accountable care organizations; federally qualified health centers; community health centers; and other organizations responsible for delivering and coordinating patient care. These are examples of the types of organizations that may conduct relevant work and do not imply an existing partnership or affiliation with The Patient Better Project.

Health systems and medical practices provide an important environment for studying patient participation across the care journey. These organizations experience the operational effects of how patients prepare for appointments, communicate health information, follow instructions, use patient portals, manage referrals and medications, coordinate among providers, and carry out care responsibilities between encounters.

The Patient Better Project welcomes healthcare organizations interested in examining patient participation as a measurable part of healthcare delivery. Research may explore where participation affects clinical workflows, communication, care coordination, continuity of care, patient preparedness, treatment follow-through, patient experience, and other measurable processes and outcomes.

Organizations may participate through pilot studies, implementation research, observational studies, quality-improvement initiatives, feasibility studies, measurement and instrument validation, clinical-site participation, or broader research collaborations. Studies may take place within individual practices, across specialties, or throughout larger systems to examine how patient participation varies across different care settings and populations.

The Patient Better Project can contribute a defined patient-participation framework, structured educational intervention, observable patient-side activities, measurement methodology under development, and research questions. Participating organizations can contribute real-world care environments, operational insight, appropriate study populations, clinical expertise, and the data needed to evaluate how patient participation functions within healthcare delivery.

Why participate? Because health systems and medical practices depend on patients to perform many activities outside the direct control of the organization. Studying those activities can help determine where patient participation influences care delivery, which participation behaviors can be strengthened, and whether improving those behaviors produces measurable benefits for patients, professionals, and healthcare organizations.

Examples of organizations in this field: Medicare Advantage plans; Medicaid managed care organizations; commercial health insurers; employer-sponsored health plans; integrated payer-provider organizations; managed care organizations; accountable care entities; population health organizations; and other organizations responsible for financing, coordinating, managing, or evaluating healthcare services. These are examples of the types of organizations that may conduct relevant work and do not imply an existing partnership or affiliation with The Patient Better Project.

Health plans and insurers have a unique opportunity to study patient participation across populations and over time. While clinical encounters provide a view of what happens at the point of care, health plans can examine how people navigate healthcare across providers, settings, services, and periods between encounters.

The Patient Better Project welcomes health plans and insurers interested in investigating patient participation as a measurable component of healthcare. Research may examine relationships between participation and healthcare navigation, preventive care, care coordination, treatment follow-through, member experience, utilization patterns, quality measures, and other measurable outcomes.

Research opportunities may include population-based studies, pilot programs, longitudinal research, implementation studies, measurement and instrument validation, member education initiatives, comparative studies, and evaluation of participation across different populations or care settings. This work can also explore whether structured education changes patient-participation behaviors and whether those changes can be detected through existing quality, experience, or utilization data.

The Patient Better Project can contribute a defined patient-participation framework, structured educational intervention, observable patient-side activities, measurement methodology under development, and research questions. Health plans and insurers can contribute population-level perspectives, appropriate study populations, longitudinal data, quality and utilization expertise, and insight into how patient behavior intersects with healthcare delivery beyond an individual clinical encounter.

Why participate? Because many healthcare outcomes depend not only on what services are available, but on what people are able to do with those services. Researching patient participation can help determine which patient-side activities can be taught and measured, how participation changes over time, and whether stronger participation is associated with measurable differences in healthcare experience, quality, coordination, and utilization.

Examples of professionals and organizations in this field: Public health researchers; schools and departments of public health; local and state health departments; federal health agencies; population health researchers; community health organizations; health education and health promotion programs; epidemiologists; implementation scientists; and organizations studying healthcare access, health behaviors, disparities, and population outcomes. These are examples of the types of professionals and organizations that may conduct relevant work and do not imply an existing partnership or affiliation with The Patient Better Project.

Public health provides an important perspective on patient participation because people must navigate healthcare within broader social, educational, economic, and community environments. Understanding what individuals are expected to do within the healthcare system—and whether they have the knowledge and skills to do those things—can help researchers examine participation beyond an individual clinical encounter.

The Patient Better Project welcomes public health researchers and agencies interested in studying patient participation across populations, communities, and healthcare settings. Research may explore differences in participation among populations, barriers to effective participation, healthcare navigation skills, access to information and resources, preparedness for care, self-management activities, and the relationship between participation and healthcare access, experience, utilization, and outcomes.

Research opportunities may include population studies, community-based research, implementation research, health education studies, longitudinal research, disparities research, program evaluation, measurement and instrument validation, and studies examining how patient-participation skills can be developed or supported across different populations.

The Patient Better Project can contribute a defined patient-participation framework, structured educational intervention, observable patient-side activities, measurement methodology under development, and research questions. Public health researchers and agencies can contribute population-level expertise, community perspectives, research infrastructure, diverse study populations, and insight into how participation may differ across environments and populations.

Why participate? Because improving access to healthcare does not necessarily mean that people are prepared to navigate and use that care effectively. Studying patient participation can help identify what people are being asked to do, where barriers exist, which skills can be strengthened, and how those abilities may influence healthcare experiences and outcomes across populations.

Examples of professionals and organizations in this field: Behavioral scientists; social scientists; health psychologists; medical sociologists; health behavior researchers; behavioral economists; communication researchers; social workers; implementation scientists; human-factors researchers; decision scientists; and academic or research organizations studying how people understand, navigate, and interact with healthcare. These are examples of the types of professionals and organizations that may conduct relevant work and do not imply an existing partnership or affiliation with The Patient Better Project.

Behavioral and social scientists can help investigate why people participate in healthcare differently, not simply whether they participate. Their expertise can help examine the individual, interpersonal, environmental, and behavioral factors that influence how patients prepare for care, communicate with healthcare professionals, make decisions, organize health information, follow through on instructions, and manage healthcare responsibilities between encounters.

The Patient Better Project welcomes researchers interested in examining the behaviors and influences underlying patient participation. Research may explore motivation, confidence, knowledge, habits, decision-making, communication, social support, perceived barriers, healthcare experiences, and other factors that may affect a person's ability or willingness to participate.

Research opportunities may include behavioral studies, qualitative and mixed-methods research, intervention studies, longitudinal studies, implementation research, observational research, behavioral measurement, and studies examining how education or other interventions influence patient-participation behaviors over time.

The Patient Better Project can contribute a defined patient-participation framework, structured educational intervention, observable patient-side activities, measurement methodology under development, and research questions. Behavioral and social scientists can contribute theoretical frameworks, behavioral research methods, study design expertise, and insight into the factors that may explain why participation develops, changes, or differs among individuals and populations.

Why participate? Because patient participation is ultimately expressed through human behavior. Understanding what patients do is important, but understanding why they do it—and what enables or prevents those behaviors—can help establish a stronger scientific foundation for determining which aspects of patient participation can be taught, supported, and meaningfully measured.

Examples of professionals and organizations in this field: Health outcomes researchers; healthcare quality researchers; health services researchers; quality-improvement scientists; patient-safety researchers; implementation researchers; population health researchers; healthcare performance analysts; outcomes-measurement specialists; and academic or research organizations studying healthcare quality, utilization, experience, safety, and outcomes. These are examples of the types of professionals and organizations that may conduct relevant work and do not imply an existing partnership or affiliation with The Patient Better Project.

Health outcomes and quality researchers can help determine whether differences in patient participation are associated with measurable differences in healthcare delivery and outcomes. This work moves the study of patient participation beyond whether a patient performs certain activities to examine whether those activities matter to the quality and effectiveness of care.

The Patient Better Project welcomes researchers interested in investigating relationships between patient participation and outcomes such as care coordination, treatment follow-through, patient experience, healthcare utilization, communication, preparedness, continuity of care, preventable complications, and other established measures of healthcare quality and performance.

Research opportunities may include outcomes studies, comparative effectiveness research, longitudinal studies, quality-improvement research, implementation studies, observational research, intervention studies, secondary data analysis, and evaluations linking patient-participation measures with clinical, operational, utilization, or experience data.

The Patient Better Project can contribute a defined patient-participation framework, structured educational intervention, observable patient-side activities, measurement methodology under development, and research questions. Health outcomes and quality researchers can contribute established outcome measures, analytical methods, study-design expertise, and the ability to evaluate whether changes in patient participation correspond with meaningful changes in healthcare processes or results.

Why participate? Because demonstrating that patient participation can be defined and measured is only part of the question. The next question is whether it makes a measurable difference. Outcomes and quality research can help determine whether stronger patient participation is associated with better care processes, experiences, utilization patterns, and outcomes—and where those relationships are strongest or most meaningful.

Examples of organizations in this field: Federal healthcare agencies; state and local health agencies; public healthcare programs; government-funded research organizations; healthcare quality and policy agencies; regulatory and oversight bodies; and agencies responsible for healthcare delivery, coverage, public health, research, or program evaluation, including organizations such as the Centers for Medicare & Medicaid Services (CMS), Agency for Healthcare Research and Quality (AHRQ), National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), Veterans Health Administration (VHA), and state Medicaid agencies. These are examples of the types of organizations that may conduct relevant work and do not imply an existing partnership or affiliation with The Patient Better Project.

Government healthcare organizations influence how healthcare is delivered, measured, funded, and improved at scale. They are particularly important to patient-participation research because many healthcare policies and programs depend on individuals performing specific activities—understanding information, navigating services, communicating with providers, managing care responsibilities, and following through between encounters—without necessarily measuring whether people are prepared to perform those activities.

The Patient Better Project welcomes government agencies, public programs, and federally supported researchers interested in examining patient participation as a measurable component of healthcare delivery. Research may investigate how participation relates to healthcare access, quality, patient experience, care coordination, utilization, health equity, program effectiveness, and population-level outcomes.

Research opportunities may include federally or publicly funded studies, demonstration projects, pilot programs, program evaluation, implementation research, population studies, measurement and instrument validation, health-services research, and collaborations examining patient participation across different populations, programs, and healthcare settings.

The Patient Better Project can contribute a defined patient-participation framework, structured educational intervention, observable patient-side activities, measurement methodology under development, and research questions. Government healthcare organizations can contribute research infrastructure, methodological expertise, diverse populations and care environments, program-level perspectives, and the ability to examine patient participation within larger healthcare systems and public programs.

Why participate? Because healthcare policy frequently defines what healthcare organizations should provide and what outcomes should be measured, while many of the activities required of patients remain assumed rather than systematically examined. Researching patient participation can help establish evidence about what people are expected to do within healthcare, whether they are prepared to do it, what can be taught and measured, and whether stronger participation contributes to better healthcare delivery and outcomes at scale.

Examples of organizations in this field: Private foundations; healthcare foundations; philanthropic organizations; research foundations; grant-making organizations; charitable trusts; corporate foundations; health-focused philanthropies; research funding organizations; and other entities that support healthcare research, innovation, education, health equity, patient-centered care, and health-system improvement. These are examples of the types of organizations that may support relevant work and do not imply an existing partnership or affiliation with The Patient Better Project.

Foundations and research funders can play an important role in advancing patient participation from an emerging concept into an established area of healthcare research. Funding can support the independent investigation needed to define the construct, strengthen its measurement, test educational approaches, and determine whether changes in patient participation are associated with meaningful differences in healthcare delivery and outcomes.

The Patient Better Project welcomes funders interested in supporting research that examines what patients are expected to do within healthcare, how well people are prepared to perform those activities, what barriers affect participation, which skills can be strengthened through education, and how participation may influence care across different populations and settings.

Funding opportunities may support foundational research, instrument development and validation, pilot and feasibility studies, intervention studies, implementation research, population-based research, health equity studies, investigator-initiated research, multidisciplinary collaborations, and dissemination of findings.

The Patient Better Project can contribute a defined patient-participation framework, structured educational intervention, observable patient-side activities, measurement methodology under development, research questions, and an infrastructure for developing a broader body of evidence. Research funders can provide the resources and independent support necessary for qualified investigators and institutions to rigorously test, challenge, refine, and expand that work.

Why participate? Because emerging areas of healthcare research require more than a promising idea—they require independent investigation and evidence. Supporting patient-participation research can help determine whether this concept fills an important gap in healthcare knowledge and whether strengthening what people are able to do as participants in their care can contribute to better healthcare experiences, delivery, and outcomes.

Examples of professionals and organizations in this field: Non-medical home care agencies; personal care agencies; companion care providers; private-duty care organizations; aging-in-place programs; senior support services; caregiver organizations; care coordinators; home care administrators; professional caregivers; and organizations that help individuals maintain independence and manage daily activities in the home. These are examples of the types of professionals and organizations that may conduct or support relevant work and do not imply an existing partnership or affiliation with The Patient Better Project.

Non-medical home care organizations offer a valuable perspective on patient participation because their work occurs where much of healthcare management actually takes place: in everyday life between clinical encounters. Caregivers frequently observe whether individuals can organize health information, prepare for appointments, follow care instructions, manage healthcare-related tasks, communicate changes, and coordinate the many responsibilities that accompany ongoing care.

The Patient Better Project welcomes home care organizations interested in helping investigate how patient participation functions outside traditional clinical settings. Research may examine how individuals manage healthcare responsibilities at home, where they require assistance, how caregivers support participation, and whether structured education can strengthen a person's ability to navigate and manage their care.

Research opportunities may include observational studies, caregiver and client interviews, pilot programs, implementation research, feasibility studies, educational interventions, longitudinal studies, case studies, and research examining the relationship between patient participation, caregiver support, independence, and continuity of care.

The Patient Better Project can contribute a defined patient-participation framework, structured educational intervention, observable patient-side activities, measurement methodology under development, and research questions. Home care organizations can contribute insight into day-to-day healthcare management, caregiver observations, community-based research environments, and an understanding of the practical challenges people experience between healthcare encounters.

Why participate? Because healthcare does not stop when someone leaves a doctor's office. Much of what determines whether a care plan moves forward happens at home. Studying patient participation in this environment can help researchers understand what people are able to manage independently, where caregiver support becomes necessary, and what skills or resources may help individuals participate more effectively in their healthcare.