Applying Community Engagement Principles to Research Design and Implementation Epi 248

1. Applying Community Engagement Principles to Research Design and Implementation Epi 248 Margaret Handley, PhD MPH, May 24, 2012

2. Learning Objectives I. Understand different paths to community engaged research II. Become familiar with MIXED METHODS approaches that can inform/enhance community engaged research III. Understand how CE-strategies can improve research i.) study SETTING, SAMPLING, and RECRUITMENT ii.) study DESIGN iii.) INTERVENTION design IV. Identify relevant CE design tools/techniques

3. I. Degrees of Stakeholder Engagement in Research Collaboration, but researcher driven Community- placed research No engagement Participatory research Secondary data analysis, basic science Recruitment from community organization Partners involved in all aspects of research Partner is sponsor on researcher-defined project LESS ENGAGED MORE ENGAGED Based on AHRQ CBPR framework. CBPR Assessing the Evidence, AHRQ 2004

4. Qualitative Methods Relevant to CE “If the only tool researchers have is a hammer, they tend to see every problem as a nail. An appreciation of both quantitative and qualitative approaches can enhance a researcher’s ability to answer complex questions in a manner which is efficient, internally valid, and generalizable” - Stange and Zyzanski, 1989

5. II. Mixed Methods

6. II. MIXED METHODS Combining and integrating qualitative and quantitative elements (in-depth interviews, focus groups, key informant, participant observation) Integration into single study or for different phases of work in a research area different methods apply to different moments in conception which is an iterative process: ‘Quanti’ can provide focus for ‘Quali’. ‘Quali’ can discover new dimensions in which quantitative methods are applied --This requires strategic relationship between data sources to combine –sequencing of methods, priority of methods, and timing of the data integration http://www.wtgrantmixedmethods.com/Literature.html

7. Mixed Methods Approaches 1. Add Qualitative Methods to Quantitative Study 2. Combine Quantitative and Qualitative Design 3. Evaluate results/contextualizing/revising Creswell et al, 2004

8. 1. Add Qualitative Methods to Quantitative Study Purpose: Understand key themes that inform research area, research questions, data collection approach, intervention design Communication needs in population (patients) Lead outbreak investigation (community) Guideline development (provider interactions) Context for intervention plans (multiple levels) Creswell 2004; Handley, Hall, Sanford, 2007; CE Johnson et al, 2009

9. 2. Combine Quantitative and Qualitative Designs Purpose: sample and and studied outcomes are ‘quanti’ and ‘quali’ Fig. 1 Mixed methods triangulation design of the factors influencing choices for colorectal cancer screening- Creswell et al 2008

10. 3. Evaluate results/contextualizing/revising Purpose: Understand the intervention better/change it, either after completed or during the intervention Focus groups re guideline (non) adherence (engaged or non-engaged audience) Narratives of adoption and behavior change (engaged audience) In depth “look back” into implementation framework and ‘mapping’ of intervention components to intervention processes/outcomes Kim et al, 2009 ASIA-PACIFIC JOURNAL OF GENERAL PRACTICE; English et al 2011. Implement Sci. 2011. 2;6:124.

11. 3. Evaluate results/contextualizing/revising Purpose: Understand the intervention better/change it, either after completed or during the intervention Focus groups re guideline (non) adherence (engaged or non-engaged audience) Narratives of adoption and behavior change (engaged audience) Kim et al, 2009 ASIA-PACIFIC JOURNAL OF GENERAL PRACTICE

12. Mixed Methods Relevance to CE? Focuses on establishing dialogue with community that is essential to supporting doing the right work How can it improve research quality? Expanding the gaze – contextual interpretive relevance Partnerships may improve trust and thereby, participation, quality of information and reach Moves research forward using existing tools, while simultaneously gathering information to improve those tools and their acceptance

13. III. CE Methods for Partnered Research Approaches

15. CE Methodsi. Setting, Sampling, Recruitment Research Dilemma: How to initiate community-based participatory research with refugee community to evaluate socio-cultural determinants of health care seeking behaviors and barriers to health care? Participatory approaches: community advisors, local interviewers Setting: outside clinic, in community settings, often private Sampling and recruitment: snowball sampling, use of video Impact of participatory findings on setting, sampling, design/implementation- critical. Johnson CE et al, 2009 Am J Prev Med. 2009 Dec;37(6 Suppl 1):S230-6

16. CE Methodsii. Quasi-Experimental Design Research Dilemma: Large health plan with patient registry adopts intervention as QI effort and wants to study impact on outcomes. • Does not want a RCT, with a control group that does not receive intervention. Plus, cannot ‘scale up’ quickly. • -Staggering implementation solves staffing challenges and enables evaluation. • -Disadvantages: some patients ‘wait’ /are interviewed twice before intervention which could impact selection and participation. Handley et al, 2011J Am Board Fam Med. 2011 Sep-Oct;24(5):589-96

17. Quasi-Experimental Design DESIGN FEATURES Stagger introduction of intervention (clusters) over T Every site gets intervention Data collected at each ‘step’ as new group of participants is to receive the intervention (control data) Often can randomize which sites start (or match/stratify) Usually only cross-over to intervention from control

18. Comparison of Intervention/Treatment Schedules with Cluster Randomized Studies Parallel Crossover Stepped Wedge Time Time Time 1 1 2 1 2 3 4 5 Cluster 1 1 Cluster 1 1 0 Cluster 1 0 1 1 1 1 2 1 2 1 0 2 0 0 1 1 1 3 0 3 0 1 3 0 0 0 1 1 4 0 4 0 1 4 0 0 0 1 1 Hussey and Huges, 2007

19. Quasi-Experimental Design -Stepped Wedge

20. Wait-List Design DESIGN FEATURES Version of stepped wedge study in which individuals randomized over a series of time stages Is a one way cross-over Increasingly relevant as large disease registries are utilized for quality improvement/patient interventions

21. Example- Wait List Design- Smart Steps Ratanawongsa N et al 2012

22. Stepped Wedge Design Relevance to CE? How can it improve research quality? RCT design often is not acceptable to community partners and every site gets the intervention with this design RCT would not be ethical since the intervention may be clearly established to provide some benefit Not disruptive to existing models of care delivery, but enables the upgrade or augmentation to be controlled Accepted strategy to study an intervention in high health disparity situations Hawkins et al 2007, Mercer et al, 2007; Hussey et al, 2007 Cilberto et al 2005; Patel et al 2005; Brown and Lilford 2006

23. CE Methodsii. Community-Advised Design Design dilemma- What is the best way to extend the outbreak investigation of lead poisoning in the community of origin, a particularly vulnerable population in Mexico? Participatory approaches: Discuss with possible partners to determine how to study the problem with a focus on community education outcomes. Community participants in California, health officials, anthropologists Research Decision: Case-cluster investigation with environmental sampling, with extended families. Impact of participatory findings on design/implementation- critical Villalobos et at, 2009. Sci Total Environ. 1;407(8):2836-44.

24. CE Methodsiii. Instrument and Intervention Development Improving Colorectal Cancer Screening Awareness Instrument/Intervention development dilemma-which forms of communication would reach population, which components to include in outreach? Participatory approaches: CAB, patient focus groups, clinician and clinic management interviews to design instruments Research Decision: Simple messages with broad forms of communication involving local community stakeholders. Impact of participatory findings on design/implementation- critical Zittleman et al, 2009

25. Homework #3 Please describe the following for your area of research with regards to your Study Setting, Design, Sampling, and Recruitment: How you would include community input? and What degree of community engagement do you think is possible for each of the above methods areas, when thinking about your current research questions?