Engaging People with Lived Experience Toolkit

This toolkit was developed by the People with Lived Experience Workgroup and Community Champions from 100 Million Healthier Lives, and is brought to you in partnership with 100 Million Healthier Lives and the Institute for Healthcare Improvement.

About this Toolkit

According to SCALE communities, partnership and collaboration with people with lived experience of a core issue and/or inequity (PWLE) was one of the most effective strategies to create lasting community transformation. Bringing PWLE into the work at all levels—in particular at the leadership level—brings wonderful depth, growth and discoveries. This toolkit was built by SCALE communities, faculty, coaches, and the 100MLives evaluation and implementation teams.

Any group that integrates people from different backgrounds, perspectives and experience needs to be able to value, integrate and support every single member. While this toolkit is focused on those who may need the most support, you may notice that many of the strategies, tips and resources contained here are those that help create a high-functioning team (understanding the team’s shared purpose, setting shared goals, listen and value each other's contributions, different perspectives, opinions and priorities, mutual support and taking shared action). There is also notable overlap with the work needed to engage communities.

While this is by no means a linear process, this toolkit is organized into 6 sections:

Learn more about people’s direct experiences with these tools and strategies in the Stories from 100 Million Healthier Lives library!

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About SCALE and 100 Million Healthier Lives

100 Million Healthier Lives (100MLives), convened by the Institute for Healthcare Improvement, was an unprecedented collaboration of change agents across sectors working to transform the way we think and act to create health, well-being, and equity. As part of 100MLives, the Robert Wood Johnson Foundation (RWJF) generously funded an initiative called Spreading Community Accelerators through Learning and Evaluation (SCALE), which began in January 2015 and ended its second iteration in April 2019. The goal of SCALE was to work with communities and organizations to accelerate their journeys toward community transformation and population health, or what RWJF refers to as a Culture of Health.

Acknowledgements

Authors

Ziva Mann, Institute for Healthcare Improvement Faculty; Elizabeth McDermott, Institute for Healthcare Improvement, SCALE Implementation Team; Kymberly Byrd, Vital Village Network; Somava Saha, Institute for Healthcare Improvement, SCALE Implementation Team; Sarah Callender, Downtown Women's Center, 100MLives Implementation Team; Jody Anderson, Live Algoma; Jonathan P. Scaccia, SCALE Evaluation Team; Aimee Budnik, Summit County; Robyn Bussey, Atlanta Regional Collaborative for Health Improvement; Will Douglas, Tenderloin Health Improvement Partnership; Seth Fritsch, Health Improvement Partnership of Maricopa County; Ananya Moorthy, Bernalillo County Community Health Council; Fran Mullin, Healthy Waterville; Esther Munene, Ethnic Community-Based Organization for Refugees; Jana Pohorelsky, SCALE Coach; Carlee Rosen, North Colorado Health Alliance; Mayra Serrano, San Gabriel Valley Healthy Cities Collaborative; Denise Smith, Downtown Women's Center; Shemekka Ebony Coleman, Institute for Healthcare Improvement and Southeast Raleigh YMCA

Story Contributions

Jody Anderson, Live Algoma; Loretta Brown, Proviso Partners for Health; Aimee Budnik, Summit County; Robyn Bussey, Atlanta Regional Collaborative for Health Improvement; Will Douglas, Tenderloin Health Improvement Partnership; Bernadette Harding, Bernalillo County Community Health Council; Lena Hatchett, Proviso Partners for Health; Carlee Rosen, North Colorado Health Alliance; Mayra Serrano, San Gabriel Valley Healthy Cities Collaborative

Video Contributions

Andrew Martin, Institute for Healthcare Improvement Faculty; Shemekka Ebony Coleman, Southeast Raleigh YMCA

Produced for Community Commons

Sara Ivey, Institute for People, Place, and Possibility

Contributors and Feedback

Egan Ansorge, Live Algoma; Catherine Craig, SCALE Coach; Michael Denning, Southeast Raleigh YMCA; Jenny Hudson, Healthy in the Hills; Cory Kendrick, Summit County; Gabriel Lara, Proviso Partners for Health; George McAdoo, Healthy Waterville; Scott McAdoo, Healthy Waterville; Veronica Rotich, Brooklyn Park; Nate Siggers, Healthy in the Hills; Brandee West, Summit County

All of the community champions, and especially the Community Champion Design Team who set up the strategies that we used for collecting data.

Shanika Blanton, Proviso Partners for Health; Loretta Brown, Proviso Partners for Health; Tina Brown, Health Improvement Partnership for Maricopa County; Enrique Cardiel, Bernalillo County Community Health Council; Susan Flanagan, Proviso Partners for Health; Clarence Hill, Wellness Now, Oklahoma; Mamadee Sesay, Brooklyn Park; Marie Schall, Institute for Healthcare Improvement, SCALE Implementation Team; Laura Brennan, faculty, Institute for Healthcare Improvement