Patient-Centered Outcomes Research for Public Health Practice
Patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) are important sources of data to inform local population health decisions and practice. PCOR “helps people and their caregivers communicate and make informed healthcare decisions, allowing their voices to be heard in assessing the value of healthcare options,” while CER “compares the effectiveness of two or more interventions or approaches to health care, examining their risks and benefits.”
PCOR and CER engage community members to guide the research agenda and produce results that highlight the specific needs of that community, which can inform local health department (LHD) programs and services to better align them with the community’s unique needs. In addition, PCOR and CER can help LHDs identify evidence-based practices (EBP) and gain confidence in developing services that integrate EBP.
NACCHO, through funding from the Patient-Centered Outcomes Research Institute (PCORI), explored different ways in which LHDs can build their capacity to implement PCOR and/or CER and to apply those research findings to public health practice.
There are numerous publicly available resources that can guide LHDs on various aspects of the research process. The resources below are not meant to be a comprehensive list but rather as a starting point for organizations seeking to gain additional knowledge and experience in this field.
- Research Overview
- Ethics in Clinical Research provides ethical guidelines for patient recruitment in research
- Ethical Codes & Research Standards, a U.S. Department of Health & Human Services (HHS) webpage offering links to learn more about research ethics
- Research Bias, a journal article overviewing the types of biases in research
- Research Fundamentals, a free comprehensive training package offering different ways to learn about the health research process and be involved in patient-centered outcomes research
- Ethics in Clinical Research provides ethical guidelines for patient recruitment in research
- Research Funding Opportunities
- PCORI Research Awards
- PCORI Engagement Awards
- Engaging Stakeholders
- Stakeholder Engagement provides a variety of resources about engaging stakeholders in research teams
- Conducting Research
- Data Management Best Practices, a guide overviewing research data management skills and relevant resources
- Principles of Epidemiology in Public Health Practice, a CDC resource on collecting and using public health data
- Qualitative Research Methods, a field guide for collecting qualitative data
- Responsible Conduct in Data Management provides an overview of considerations in data collection
- Statistical Packages
- Learning Statistics with R, an online book about using the R statistical package
- SPSS, a statistical package
- Stata, a statistical package
PCOR and CER can encompass a breadth of initiatives, and LHDs play a myriad of important roles in the research process. For example, LHDs can conduct the research as a Principal Investigator (PI) or serve as a research stakeholder to provide insight into relevant methods, community engagement, and effective communication strategies. Below are examples of how health departments have engaged in PCOR and/or CER via PCORI funding in recent years.
- Projects specific to a clinical diagnosis and/or treatment:
- Comparing Two Ways to Improve Pre-Exposure Prophylaxis (PrEP) Use for HIV Prevention
- Defining Unmet Patient-Centered Health Care Needs in the 4th Trimester
- Engaging Immigrant Latino Families and Community Stakeholders to Reduce Disparities in Child Obesity
- Evaluating Home-Based Health Coaching from Community Health Representatives for Navajo Adults with Type 2 Diabetes
- Familia Unidas (United Families): Pre-diabetes Diagnosis and Treatment
- Reducing Cancer Disparities by Engaging Stakeholders
- SHARE LA: Setting HPV-Activated Research Engagement Priorities in Los Angeles County
- University of California San Francisco Black Health Initiative (UCSF BHI) COVID-19 Response
- Projects primarily focused on stakeholder engagement:
- Building Capacity to Break Down Barriers to Complex Care Navigation in Rural America
- Collaborations for Health and Empowered Community-based Scientists (CHECS)
- Creating a Patient Stakeholder Council and Patient Partner Network: Resources for Colorado Patients
- Disseminating Community Health Worker Training from the Guidelines to Practice (G2P) project
- East Carolina Partnership to Address Health Disparities through Engagement Research Training
- Engaging Migrant and Seasonal Farmworkers in Healthcare Research
- Engaging Patients and Diverse Stakeholders of Color to Create Birth Equity: A Collaborative Effort
- Engaging Patients, Community, and Health System Stakeholders to Establish PCOR Priorities
- Engaging Pregnant Women in PCOR to Improve Neonatal Outcomes
- Project ACCCES: A Collaboration to develop Capacity for Community-Engaged research in Springfield
- Virtual Rural Oncology Community (V-ROC)
- Application to Community Health Improvement
- CDC's Community Health Assessment & Health Improvement Planning webpage provides information and guidance to help LHDs as they develop community health assessments and health improvement plans
- Community Health Assessment Toolkit offers a nine-step pathway for conducting a CHA and developing implementation strategies
- Engaging Patients and Communities in the Community Health Needs Assessment Process is a step-by-step guide developed by Health Research and Educational Trust proposing a new method of involving patients and community members in the CHNA process
- Improving Health in the Community: A Role for Performance Monitoring, a book from the Institute of Medicine, provides an overview of a process for community health improvement
- Mobilizing for Action through Planning and Partnership, an interactive community health assessment and planning (CHA/CHIP) process facilitated by health departments, nonprofit hospital systems, and community-based organizations to work with cross-sectoral partners and community representatives to collectively identify and prioritize public health issues
- NACCHO's Community Health Assessment and Improvement Planning webpage offers a description of the steps in a CHA/CHIP, and links to additional resources for each of the six steps
- Community Health Action Planning
- Build the Community Action Plan provides an example community action plan
- Developing Goals, Strategies, and an Action Plan overviews the steps to identify broad strategies for addressing issues and achieving goals related to the community's vision
- Application to Community Health Education
- A Checklist for Communicating Science and Health Research to the Public provides an overview of how to communicate about research
- GATE Social Media Toolkit is a guide for public health professionals, researchers, providers, patients, survivors, caregivers, and other stakeholders to developing a social media strategy to promote communities of practice
- Gateway to Health Communication, a one-stop shop for health communicators
- Health Communication and Social Marketing: Campaigns That Include Mass Media and Health-Related Product Distribution, a systematic review evaluating the effectiveness of health communication campaigns delivered through multiple channels, including mass media
- Health Communication Strategies and Resources has resources that can support health communication planning, research activities, disease prevention efforts, and program development and evaluation
- Health Department Communications, a NACCHO webpage offering resources and information on public health communication
- Making Data Talk, a workbook developed by the National Cancer Institute (NCI)
- Health Promotion and Disease Prevention Theories and Models from the Rural Health Information Hub provides an overview of theories and models that support the practice of health promotion and disease prevention
- Making Health Communication Programs Work, communication planning guidelines from the National Cancer Institute
- PCORI Dissemination and Implementation Framework, a dissemination and implementation (D&I) framework to facilitate strategic planning for sharing information and for putting new evidence into practice to speed change
- PHRASES Toolkit provides evidence-based framing and messaging tools and strategies to help public health professionals communicate across sectors
- Rural Health Information Hub has examples of health communication interventions, considerations for implementation, and resources to learn more
- Theory at a Glance: A Guide for Health Promotion Practice, a guide from the National Cancer Institute that describes influential theories of health-related behaviors, processes of shaping behavior, and the effects of community and environmental factors on behavior
To learn more about NACCHO's work to build LHD capacity, share resources, or inquire about how to engage in PCOR/CER, please contact us at [email protected]