Community-Based Participatory Research- Enhancing Quality and Access to Lifestyle Counseling and Health Behavior Change: A PPRNet Dissemination and Implementation Project Medical University of South Carolina Chanita Hughes Halbert, Ph.D. Steve Ornstein, M.D. Cathy Melvin, PhD Lynn Nemeth, Ph.D. Andrea Wessell, Ph.D. Ruth Jenkins, Ph.D. Paul Nietert, Ph.D.

Community Engagement Working Definition …the process of working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situations to address issues affecting the well-being of those people. It is a powerful vehicle for bringing about environmental and behavioral changes that will improve the health of the community and its members. It often involves partnerships and coalitions that help mobilize resources and influence systems, change relationships among partners, and serve as catalysts for changing policies, programs, and practices (CDC, 1997, p.9)

Primary Goals of CBPR/CE Enhance the value and applicability of research to all potential users through shared learning, decision-making, and ownership of research activities and products Increase the community’s ability to address its own problems and is intended to leave something positive Vishwanathan et al., Community-based participatory research: assessing the evidence. Evidence Report: AHRQ, 2004; MacQueen and Mercer, Am J Public Health, 2001;91:1926

Who should participate? Often assumed to be the lay community, where the community is defined by a physical space (e.g., neighborhoods) However, participants can also be public health practitioners and agencies, health care providers, and their constituents and clients Green and Mercer, Am J Public Health, 2001

How much community participation? Minimum—stakeholders involved at the beginning (formulating research questions) and end (interpreting and applying the findings) Maximum—stakeholders involved as active partners throughout the research process Right level of participation depends on the type of research, etc. Green and Mercer, Am J Public Health, 2001

Benefits of CBPR/CE Informs current and future research agenda Improves study design and delivery Accelerates use of research findings to achieve change Creates opportunities to improve and facilitate research ethics processes Enhances public knowledge and skills to lay the groundwork for future research

Benefits of CBPR/CE Enhances academic partner understanding and appreciation of issues relevant to the community Eases individual concerns about participation in research Helps community organizations gain knowledge, visibility, capacity, and partnerships to lay groundwork for future collaborations General public is likely to be more receptive to research and reap greater benefits from it

Community Involvement in the Research Process Planning –Issue identification and selection –Development of research questions and hypotheses –Development of interventions –Eligibility criteria Implementation –Recruitment and retention –Data collection and quality assurance Evaluation –Interpretation of results within the context of the community Dissemination –Sharing results with other stakeholders and constituents

Conclusions Community members and academic investigators can work together to address lifestyle health behaviors It is important to disseminate and implement interventions into community and clinical settings Scaling up evidence-based interventions to different geographic regions is needed

Structures that are Important to Have in Place to Facilitate Community Engagement Leadership committee Working groups that address specific issues –Intervention development –Evaluation –Dissemination and outreach Advisory boards

Advisory Boards Identify and establish priorities Provide advice about research activities and study implementation Ensure dissemination of findings to key stakeholders

What would be the value of establishing a Patient Advisory Board in PPRNet?

How could a Patient Advisory Board be established in PPRNet?

Dissemination and Implementation Science to Address Racial and Ethnic Disparities in Lifestyle and Health Behavior Change Counseling

Health Disparities Differences in the quality of health care that are not due to access-related factors or clinical needs, preferences and appropriateness of intervention Differences in the incidence, prevalence, mortality, and burden of cancer that exist among specific population groups in the US

Social Determinants of Health

Health care providers are important for promoting lifestyle behavior change among patients There are many barriers to provider counseling about lifestyle changes and patient acceptance of these recommendations Efforts are needed to increase the translation of evidence-based strategies for lifestyle modification and health behavior change counseling into primary care ©PPRNet 2013

SPECIFIC AIMS Identify and synthesize evidence-based strategies for lifestyle modification and health behavior counseling among racial and ethnic minorities Identify and prioritize concerns and preferences about the delivery and use of lifestyle modification and health behavior counseling among health care providers and patients Develop implementation and evaluation plans that specify the procedures for delivering evidence-based strategies in primary care Evaluate the process of engaging provider and patient stakeholders in efforts to reduce disparities in quality and access to lifestyle modification and health behavior change counseling

Conceptual Model and Study Procedures Phase I Priority and Preference Identification Evidence Synthesis Review Behav, Environ, & Ecological Assessment Clin, Soc, & Epidemiol Assessment Phase II Dissemin & Translation Evidence Dissemination Implement & Eval Plan Dissemin Implement & Eval Plan Develop Abbreviations: Clin=Clinical; Soc=Social; Epidemiol=Epidemiological; Behav=Behavioral; Environ=Environmental; Eval=Evaluation; Dissemin=Dissemination; Implement=Implementation Data Integration

Phase I Methods Evidence synthesis review Focus groups with patients Key informant interviews with health care providers Lifestyle and health behavior survey with patients

Phase II Methods Evidence dissemination –Academic detailing with practices Develop implementation plans Develop evaluation plans Dissemination of implementation and evaluation plans Impact evaluation

Discussion Initial reactions to the project aims Relevance for PCP practices –How does the project meet patient needs? –How much does the project match provider priorities? –How much does this project match patient priorities? Reactions to project activities –What is missing? –Are there any barriers?

BREAK

EVIDENCE SYNTHESIS REVIEW

OBJECTIVES To examine the evidence base for the effects of lifestyle modification counseling and alternate methods for integrating health behavior change strategies into primary care, especially for specific chronic conditions such as diabetes and cardiovascular disease To determine the extent to which the effects of counseling for lifestyle modification and health behavior change have been examined in racial and ethnic minorities and other medically underserved populations

METHODS Traditional Searches Utilized established databases for peer-reviewed research (e.g., PUBMED, MEDLINE, CINAHL, SCOPUS, PSYCHINFO, Cochrane Libraries) Conventional Searches Utilized NCI RTIPS and AHRQ Innovations Exchange databases to extract relevant articles from research- tested programs Hand Searches Utilized reference lists from literature reviews and meta- analysis to extract relevant studies

SEARCH TERMS USED Traditional Searches Community-based participatory research Primary care and/or ambulatory care physicians diet and/or nutrition Physical activity and/or exercise Weight loss and/or weight management BMI Obesity Counseling and/or nutritional counseling Lifestyle changes or lifestyle Cardiovascular disease Hypertension Stroke Diabetes Prevention or primary prevention Behavior modification Health or health behavior Race and/or ethnicity Conventional Searches Diet and nutrition Obesity Endocrinologic/Metabolic care Diabetes Cardiovascular care Physical activity Informed decision making Primary care Physician office Ambulatory setting Health plans and managed care organizations Clinical United States Male and Female All race/ethnicity Young Adults Adults Older Adults Community Rural Suburban Urban

METHODS cont. CATEGORYINCLUSION CRITERIAEXCLUSION CRITERIA Study Design  All trials including RCT, Comparative Effectiveness studies, etc. (should have a comparator such as another intervention or usual care control group)  Observational  Cross-Sectional  Qualitative  Editorial  Newspaper article  Press release  Commentary  Conference talk  Case studies Setting  Primary Care  Ambulatory Care  University Internal Medicine  Health Clinic (FQHC or public health clinic)  Hospital/Inpatient  Community  Academic Timeframe: Prior to 2004 Language English-speakingNot English-speaking Country Only U.S.Not U.S. Population Adults ages 18-75Adults aged 75 Intervention  Lifestyle counseling related to diet, physical activity or obesity  Interventions with a nutrition and/or weight management component  Intervention components that pertain to counseling, printed materials, coaching, etc.  Outcomes related to diet/nutrition, physical activity, weight loss, BMI, and disease management relating to CVD, diabetes and obesity  Doesn’t have components aforementioned in inclusion criteria  No lifestyle counseling or diet/physical activity activities integrated into the intervention

GROUP ARTICLE REVIEW Could the intervention strategies be implemented in your practice? What would be facilitators of implementation? What would be barriers to implementation? How would your patients respond to interventions?

NEXT STEPS FOR ESR Complete full-text article reviews of all included articles Develop final evidence tables Develop final synthesis report Disseminate synthesis report through academic detailing to PPRnet primary care clinics Develop implementation tool kits

Roles and Responsibilities of Participating Practices

DISCUSSION AND NEXT STEPS Reactions to the overall approach for the project Ideas for completing activities in their practice Identifying the best person from their practice with whom we will work