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.

Background

Medical guidelines use words and ideas that often are not easily understood by patients. This makes it difficult for patients to choose the best treatment. The High Plains Research Network Community Advisory Council of farmers, school teachers, and other community members noted that the community did not know much about colon cancer. In response, they developed a process they named Boot Camp Translation, which translates complex cancer screening guidelines into information that is relevant to the local community.

Project Purpose

This study used the Boot Camp Translation approach with several healthcare topics in diverse communities. The research team looked at participants’ experience with Boot Camp Translation to identify the parts that participants thought were most important.

Methods

The research team trained more than 65 researchers, medical providers, and community members to be Boot Camp Translation facilitators. These facilitators led groups with 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. In all, eight communities worked on projects for different healthcare topics such as diabetes or high blood pressure.

The researchers interviewed four facilitators and 10 participants from various groups to learn about their experiences with the process to identify the core features that they thought were essential to Boot Camp Translation.

The interviews focused on what worked in the Boot Camp Translation process to help researchers refine the method and improve training for future boot camp programs. The researchers asked interviewees what skills facilitators and participants need, how to keep participants engaged, and whether they were satisfied with the Boot Camp Translation process.

Findings

Each Boot Camp Translation project developed messages for their communities and strategies to share those messages.

Participants said the Boot Camp Translation process helped them translate complex medical information into common language and ideas for community members. Interview participants identified several key features of Boot Camp Translation:

• Equally valuing every participant’s experience
• Respecting each participant’s expertise
• Presenting complicated medical information with enough time for people to ask questions
• Having meetings take place over 6 to 12 months
• Starting the process with a six- to eight-hour meeting in person, followed by other meetings and phone calls
• Having more community members than experts, academic researchers, and facilitators take part in the groups
• Including participants who can see beyond their own point of view
• Working as a group to write messages, create materials, and plan ways to tell others about them

Participants said Boot Camp Translation requires skilled facilitators to help make sure the groups hear from everyone, including community members.

Limitations

This study looked only at how the Boot Camp Translation process worked, not at the materials the project teams produced.

Conclusions

Boot Camp Translation is a way for community members to be involved in turning complex medical recommendations into messages that are relevant to the community.

Sharing the Results

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

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.