Conducting consumer-led research to explore consumer engagement experiences

Community & consumer engagement Measurement & evaluation

By Evelyne Kane, Program Manager for Community Engagement at the Camden Coalition;  Danielle Hodges, Program Manager for Data and Quality Improvement at the Camden Coalition; Olivia Richard, National Consumer Scholar; Stephanie Burdick, National Consumer Scholar; and Suzette Shaw, National Consumer Scholar

Since 2016 the National Center has engaged grassroots leaders from across the country in our National Consumer Scholars program. Consumer Scholars are individuals with lived experience of complex health and social needs, or caregivers of people who identify as such. Consumer Scholars also have experience working as consumer advisors and advocates alongside complex care organizations across the country. In past years, the National Center primarily worked with Consumer Scholars by supporting their participation in our annual Putting Care at the Center conference. For the 2019-2020 cohort, we were able to expand the program so that teams of Consumer Scholars spent about nine months partnering with departments across the Camden Coalition, which houses the National Center, working on a variety of projects. Examples of these projects included:

  • Co-leading a research project to explore consumer engagement experiences;
  • Supporting the development of a technical assistance toolkit;
  • Planning and hosting a national webinar; and
  • Co-designing our new consumer voices bureau, Amplify.

Our Consumer Scholar research team worked with a member of the Camden Coalition’s data and evaluation team to design and conduct a survey to explore consumer engagement experiences from the perspectives of complex care consumers as well as from staff and providers at complex care organizations. To share the outcomes of this project, we wrote a research brief which we are excited to share with the complex care field. Below are comments from members of the research team about their experiences participating in this project, as well as what they hope others gain from reading our brief:

Olivia Richard

Olivia Richard (2019-2020 Consumer Scholar):

My experience of working on this research project was very good. I felt like I was making a difference by coming up with actionable data that could be used by organizations that want to create authentic partnerships with their consumers. Our research team was great — we each had our own skill sets and our own way of doing things that balanced each other out. I hope people use this report to gain better insight into what goes into creating more long-lasting partnerships with their consumers, and not only bringing consumers in for one-time engagements. I hope that it helps to address tokenism because this is a real problem for many consumers in this work. In the report, we say that consumers want to have deeper experience, and do not want to feel like they are being used for their lived experiences. It is important for organizations to take this lesson to heart.

Stephanie Burdick

Stephanie Burdick (2019-2020 Consumer Scholar):

Oftentimes, people with lived experience are asked to participate in various projects, focus groups, or advisory boards but it’s not always clear what the objectives are or what outcomes occur after we give our feedback. One of the reasons I liked this particular project was that we were included in every step of the way. We helped design the objectives and determine the questions on the survey, who took the survey, and how to understand the conclusions.There are a lot of important and meaningful takeaways from this research, and there are also still some unanswered questions that should be explored more. However, the one I would like for stakeholders to really let sink in is: be honest with consumers. Please do not waste our time if you do not want honest feedback you can implement. If there are parameters to what feedback you actually want or can do something with, tell us right away. People are tired of giving feedback, being asked to sit on focus groups, provide experiences, and share our trauma-filled stories just for things to keep going on without any change. If you’re ready for the work of change, then please consult and pay those with lived experience. If you’re not really ready to implement criticism or feedback, please don’t waste our time. 

Suzette Shaw

Suzette Shaw (2019-2020 Consumer Scholar):

In the early 80’s I studied Health Science Education at Arizona State University. I was the only Black person in my school’s department, including administration and professors. While there, I volunteered — and eventually worked — at the local health clinic on campus. There too, I was the only Black person. In both capacities I dealt with microaggressions and racism. I had no voice as a young, Black, impressionable female. Therefore, I internalized a great deal of the harm inflicted upon me, for decades. I was pushed out of the higher education system, never to return. Finding my voice, power, and purpose in the midst of displacement, marginalization, and trauma is a complex dichotomy in my journey towards healing — for myself, my family, and the community I now call home, Skid Row. Taking part in this research project has been a humbling treat. I hope that this work can be utilized as a national public health educational tool. These community-based findings shed light on the importance of the lived expertise in shifting the paradigm, as well as some of the systematic failures which continue to perpetuate harm to sub-populations already faced with the intersectionality of health disparities, comorbid health challenges, displacement, ageism, and more. The voice of the lived experience community is as significant as it is pivotal with regards to shifting the paradigm, for the system and the consumers it serves.

Danielle Hodges

Danielle Hodges (Program Manager, Data & Quality Improvement):

As someone who thrives off the feelings of connectedness and inspiration that collaboration brings, I truly enjoyed partnering with Olivia, Stephanie, Suzette, and Evelyne. From this experience, not only did I learn so much about the different levels and impact of consumer engagement, I had the opportunity to really practice what we at the Camden Coalition preach. I was challenged to act, communicate, and think more inclusively, gaining so much in the process. Conducting a project of this nature was new for us all and stretched us in ways that I believe will benefit us and the field for years to come. I appreciate the diversity in perspectives of these amazing Consumer Scholars, and respect their willingness to remain engaged in the midst of a pandemic. In addition to discussing ways for the complex care field to improve the engagement of people with lived experience, I really enjoyed learning about each other’s personal journeys toward making positive change in healthcare. I hope that this work encourages others to prioritize the amplification of consumer voices and interprofessional collaboration.

Evelyne Kane (Program Manager, Community Engagement):

I feel incredibly fortunate to work with our National Consumer Scholars. Our 2019-2020 Consumer Scholars cohort, including the members of the research team, have taught me many lessons about the value of lived experience, and the ways in which organizations and systems can improve their perspectives and practices to ensure consumers not only have a seat at the table but are also part of the building of the table. To move complex care forward, we need to value in earnest the voices and expertise of complex care consumers. I hope this research project provides both a model by which other organizations can engage complex care consumers, as well as offers lessons that shed light on some of the important considerations for how to build meaningful and authentic partnerships with people with lived experiences. I am grateful to my team members, Olivia, Stephanie, Suzette, and Danielle who taught me so much, and were a pleasure to work with throughout this project!

Download the brief

Applications for our 2021-2022 cohort of National Consumer Scholars are open now and will close June 11, 2021. For more information about applying, click here.

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