PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.

Project Purpose

Medical guidelines use language and concepts that often are not easily understood by patients, making it difficult for them to choose the best treatment. The High Plains Research Network Community Advisory Council of farmers, school teachers, and other community members identified a lack of community knowledge about colon cancer and developed a process they named Boot Camp Translation (BCT) to translate the complex screening guidelines into locally relevant messages.

The research team conducted an initial evaluation of BCT to assess participants’ experiences with the process and identify core features that participants thought were essential to BCT.

Study Design

The research team implemented BCT in eight diverse communities, where 10 groups worked on different healthcare topics such as hypertension or diabetes. They then evaluated the experiences of BCT participants and facilitators.

Patients, Interventions, Settings, and Outcomes

The team trained more than 65 researchers, medical providers, and community members in BCT facilitation. These facilitators led groups that included more than 100 patients, 40 medical providers, 50 community members, and 25 community organization leaders in rural, urban, African-American, and Latino communities in Colorado, Oregon, Iowa, Wisconsin, and North Carolina. Settings included churches, primary care practices, and community organizations.

For the evaluation, between April 2013 and April 2014, researchers interviewed four facilitators and 10 participants from various groups. The interviews focused on what worked in the BCT process to help researchers refine the method and improve training for future boot camp programs. Researchers asked interviewees what skills facilitators and participants need, how to keep participants engaged, and whether they were satisfied with the BCT process.

Data Analysis

The evaluators maintained notes about each interview. They highlighted main issues and themes; impressions, concerns, ideas, or reflections; and new or remaining target questions to consider for the next interview. The evaluators reviewed interview transcripts for emergent domains. The identified domains included key features of the BCT method and factors important for successfully administering BCT.

Findings

Participants interviewed for the evaluation said the BCT process helped them translate complex medical care into common language and concepts for community members. In the evaluation, participants who were interviewed identified several key features of BCT:

• Shared expertise that was of equal value among participants
• Respect for each participant’s individual expertise
• High-level medical information with time and process for questions
• Ongoing engagement of participants for 6 to 12 months
• A six- to eight-hour initial in-person meeting with follow-up meetings and phone calls
• More community members than experts, academic researchers, and facilitators
• Participants who can work beyond their own singular agenda
• Co-creation by the whole group of messages, materials, and dissemination strategies

Participants also suggested that BCT requires advanced facilitation skills and a commitment to share power with community members.

Each boot camp developed tangible, “translated” products covering clinical topics with associated dissemination strategies.

Limitations

This study addressed implementation of BCT but did not evaluate the outcome of the BCT projects themselves, such as materials generated.

Conclusions

BCT is a method for patient and community member engagement in research. It translates medical jargon from evidence-based guidelines and recommendations into locally relevant, actionable messages and programs.

Dissemination

The research team has presented posters, podium presentations, and workshops at local, state, national, and international health research meetings.