The Public Health Center of Excellence on Dementia Caregiving (PHCOE-DC) changed the name of its advisory group from Stakeholder Engagement Advisory Group (SEAG) to Lived Experience Advisory Group (LEAG) to acknowledge that the term “stakeholder” may be inappropriate, harmful, and disrespectful to many populations due to historical contexts. PHCOE-DC hopes that this new name will demonstrate their commitment to inclusivity and respect.
1. On what date did the name change occur?
- July 2023
2. What made you as an organization decide to change the name?
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- We believe that in order to elevate the voices and lived experiences of people with dementia and caregivers in culturally and ethnically diverse communities, we must create a space that is inviting, respectful and inclusive of everyone. We are grateful to our colleagues at IA² for making us aware of the negative connotation and traumatic history that the word “Stakeholder” carries in tribal communities. We agreed that if we were to meaningfully include and engage the members of our AI/AN communities, we needed to start by changing our name.
3. Do you think people understand the historical context of word?
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- I think a growing number of people are learning about it. At PHCOE-DC, while some of our members were not aware of the history behind the term “stakeholder” and what it represents for AI/AN people, everyone immediately agreed that we need to stop using the term. Members of our Executive Committee and also of our LEAGs appreciated learning about this and we hope that they will carry this awareness into other areas of their work and coalitions they are part of.
4. What was the change process like?
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- Since April 2023, we have educated all the members of our center and of our LEAGs about the term “stakeholder” and sought their feedback for alternative names for the group. We had an open conversation with our LEAG members to inform them of the problems with the term “stakeholder”. They were incredibly receptive and immediately began to think of new name options that better represented the group. We also consulted with and sought input from our BOLD program officers at the Center for Disease Control and Prevention (CDC), to ensure that our new term would align with CDC’s recommendations for Preferred Terms for Select Population Groups & Communities. The term “stakeholder” has since been deleted from our website and we have committed to not using it in future Center materials or events.
5. Why is it significant in the field that you work in?
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- Meaningful community engagement and collaboration with diverse cultural communities are central to all public health work, and they can only be achieved if the relationships are based on mutual trust and respect. This begins with the language we use. Words are important because they carry history and power in them, and as a public health community, we must be mindful of how we communicate, invite communities to the table and include them in our work. This focus on inclusive and culturally-responsive language is also reflected in the actions set out in the Healthy Brain Initiative Road Map, which provides guidance for public health to build partnerships, advance equity and improve brain health for all communities.
6. What do you think when you hear “words matter” relative to the word?
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- Words are important because they carry history and power in them, and as a public health community, we must be mindful of how we communicate, invite communities to the table and include them in our work.
7. What message do you have for other organizations about the term?
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- To approach their work with cultural humility, and to truly listen. Exclude the word stakeholder from their collective vocabulary, and to seek better understanding and more information directly from the communities they serve.
If you are interested in joining the LEAG as a public health official or caregiver, please visit their website for more information and to fill out an interest form!
