Understanding preferred language for ‘people with lived experience’

National Consumer Scholars sit thoughtfully around a table as one participant talks and gestures with his hand.
Author
Evelyne Kane, Senior Program Manager, Community Engagement & Capacity Building
Date
October 7, 2022
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October 7, 2022
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Two weeks after joining the Camden Coalition, I attended our 2019 Putting Care at the Center conference in Memphis, TN. During the opening reception, I chatted with another attendee who asked about my role at the Coalition. “I work with our National Consumer Scholars!” I told him. “Consumer Scholars?” he asked skeptically, “Do people like being called that?”

It was a good question, and one I had puzzled over before that day. After returning from the conference, we asked the Consumer Scholars how they felt about the title. Overall, the Scholars said they were okay with the word “consumer.” They said that while language is important, the way organizations referred to them was not as important as how organizations treated them — whether this be in the capacity as a person receiving care and services, or as a person partnering with an organization as an advisor or stakeholder. 

While the Consumer Scholars did not feel strongly about changing the program name,  questions about the use of terms such as “consumer,” “patient,” and “person with lived experience” have continued to arise in our work.

Over the past two years, the growing interest in diversity, equity and inclusion (DE&I) initiatives has given rise to more frequent conversations about inclusive language. Organizations across sectors have created language guides to provide recommendations about things like racial identification and person-first language. Running alongside this DE&I work has been an increased focus on inclusion of people with lived experiences (PWLE), but inclusive language guides rarely address preferred language for this identity.

To get a better understanding of how PWLE feel about various terminologies, we created a survey on the topic and collected responses (see Appendix A) from fifteen PWLE including members of our Community Advisory Committee, National Consumer Scholars, and Amplify: A consumer voices bureau

Our survey included a list of seventeen different terms used to describe PWLE/community members/end-users of systems of care. From this list we asked people to indicate which term(s) they preferred and which term(s) they would never want to use. 

When asked what terminology people preferred to use to identify themselves:

  • 100% of respondents said they prefer the term “person with lived experience” 
  • 60% of respondents said they prefer the term “consumer advocate” or “patient advocate”
  • 53% of respondents said they prefer the term “community member”

When asked what terminology people would not ever want to use to identify themselves:

  • 47% of the respondents said they would never want to use the term “recipient”
  • 40% of the respondents said they would never want to use the term “patient” or “context expert
  • 33% of respondents said they would not never to use the terms “patient expert or “patient/family expert” 

While “person with lived experience” was a preferred term for all survey respondents, otherwise results were marked by differing opinions. There are few hard and fast rules when it comes to preferred language. Rather, it is important to understand various strengths, limitations, and contextual factors when selecting terminology. We offer some considerations below:

Person with lived experience

[Person with lived experience] simply identifies my journey over the last decade. Although it is not the sum of me, nor my life experience(s), it in a nutshell, opens the door for further conversation(s).

— Suzette Shaw, National Consumer Scholar alum

As the only universally preferred term in our survey, “person with lived experience” is a widely acceptable option. Some considerations include:

  • On its own, it is unclear what “lived experience” is referring to. Within certain contexts — for instance the Advisory Board of an organization providing services to people experiencing homelessness —  it may be easy to assume what type of lived experience is being referred to, but out of context, lived experience can mean many things.
  • People may wrongly assume that lived experience is mutually exclusive with professional experiences. Many PWLE also hold professional roles and represent a variety of lived, professional, and educational experiences. Highlighting only lived experiences when referring to someone can — but should not — diminish other aspects of a person’s experience or expertise.
Consumer

I feel that the word [consumer] may denote a negative meaning in our modern world with how simply being a "consumer" means to take, to indulge, to consume greedily without giving back — though we know more than ever that those with lived expertise often want nothing more than to be participants in their wellness journey… I know that the term has been used progressively in the past, but I understand that language matters and can change.

— Lauren Pelley, National Consumer Scholar

A term most frequently used at the Camden Coalition, “consumer” comes with both strengths and limitations:

  • On one hand, some people feel a positive association with the Mental Health Consumer Movement and a shared sense of identity within this community
  • On the other hand, some people feel that “consumer” is a misnomer when talking about healthcare. As one mother of a child with complex needs shares in this Health Affairs article, “How do we use a term like consumer, which usually implies a choice, in an industry in which the ability to make our own choices is rare, and in which no one chooses to become sick?”
  • As opposed to more general terms, such as PWLE or community member, consumer can often be more readily understood to mean those who are the end-users of a particular system, program, and/or product.
Advocate

“Consumer advocate” or “patient advocate” were popular terms on our survey. 

  • Interestingly, some people who did not like the term “patient” still indicated that they preferred “patient advisor” or “patient advocate.” 
  • It’s useful to keep in mind that not all work that PWLE do is best termed “advocacy.” The role of an advocate and the role of an advisor have important differences. One such difference is often the position of the person relative to the system they are working in. Advocates may be thought of as someone working from outside the system to affect change, rather than a partner or stakeholder working with/within the system.
Patient/recipient

These terms [“patient” and “recipient”] suggest that an individual has problems that need to be addressed. To refer to an individual with such terms could have a negative impact on that individual.

— Cisily Brown, Community Advisory Committee, National Consumer Scholar, Amplify participant

In our survey, “patient” and “recipient” were among the least preferred options.

  • The use of the term patient has been addressed more widely in published literature than other terminology we discuss here. Still, opinions differ:
    • One 2018 study concluded that: “healthcare recipients appear to prefer the term ‘patient,’ with few preferring ‘consumer’”
    • Another author noted that: “The word “patient” conjures up a vision of quiet suffering, of someone lying patiently in a bed waiting for the doctor to come by and give of his or her skill, and of an unequal relationship between the user of healthcare services and the provider.”
  • It is also important to recognize that in complex care, “patient” (if the word is/should be used at all), only applies to medical settings, while complex care endeavors to break down silos between traditional medical/healthcare and social care services.
Community member

“Community member” was a popular term in our survey. 

  • Similar to PWLE, though, “community member” can at times be vague or imprecise. By saying someone is a “community member,” it can be unclear what community or communities is one referring to.
  • Another consideration is an important distinction between “community” (a group of people with a shared identity and/or geography) and “consumer” (a person who is the end-user of a service). In complex care, we often talk about consumers AND their communities to denote that while there are specific populations who are the intended end-users of our services and systems, they are positioned within a larger community — including people who may or may not have the same health and social needs.
Consumer expert, patient expert, or person with lived expertise 

Titles that attach the word “expert” such as “consumer expert”, “patient expert”, or “person with lived expertise” were some of the most polarizing terminologies on our survey. 

  • Some survey respondents feel strongly that use of the word “expert” acknowledges a skillset of PWLE that may be otherwise overlooked. In a field like healthcare where credentials are highly valued, they felt that use of the word “expert” helped validate their place at the table and reinforce that they were on equal footing with other professionals.

Our expertise is equally valuable to [an] academic skill set, and language helps the brain connect to images that either equates our excellence or places it on a lower level.

— LaRae Cantley, National Consumer Scholar

[Terms like “consumer expert”] show that I am an expert in the Consumer movement and that I am dedicated to fight for the rights of consumers.

— Rodney Dawkins, National Consumer Scholar alum

  • On the other hand, some respondents expressed discomfort with the word “expert”; and terminology that used this word were among the least popular options on our survey.

I would never use the word "expert", because it feels too definitive. I feel as much as someone may know, they cannot possibly know everything- there's always more to learn.

— Alyce Luna, National Consumer Scholar

While I have lived experience that may qualify me as an expert, I work to remain humble and actively on the same level as patients, clients, or consumers to reduce or eliminate perceptions of arrogance that often is attached to our expertise.

— Jonathan Harp, National Consumer Scholar alum, Amplify participant

A couple of final points

First, many people noted that while this terminology overlaps, it is not all synonymous. Some terms better describe people during specific situations than others. At times, a PWLE may be discussing aspects of their own medical needs with a care provider. At other times, PWLE may be serving as partners in healthcare as a member of an Advisory Board advising on healthcare program design. People may prefer to identify differently in different contexts.

Secondly, when asked what advice they would give to health/social care professionals who are unsure how best to refer to people with lived experience, the majority of respondents said to ASK.

There are times when one is a patient but later learns to be an advocate. Participants are people with lived experiences who have agreed to participate in research, trials or surveys but may not be a patient — instead a caregiver for a loved one. It is all about asking the person how they want to be referred to.

— Connie Montgomery, National Consumer Scholar

This excellent advice, however, is not feasible in every situation. For example, an organization may operate a Patient/Family Advisory Board (PFAB), and while initially this title may have been a point of discussion with PFAB members, it is not a guarantee that all members agreed with this terminology, that every new member can have a chance to weigh-in on the name, or that the PFAB can be continuously rebranded each time group preferences change. There are also times when an organization is referring to a large or non-specific group of people (e.g., all patients of a health system) where it is not possible to ask each person about their preferred terminology. 

In these instances, organizations should make an informed decision about the language they choose to use — ideally informed by partnership work with PWLE in their community. When necessary, organizations should also provide an explanation for why they have chosen the terms they use, and an acknowledgement of any important reasoning and/or limitations they want to draw attention to. 

Not to be overlooked though, is the piece of advice that surfaced from our early conversations with the Consumer Scholars on this topic: language is only one aspect of demonstrating respect for PWLE. Beyond thoughtful consideration of terminology, it is crucial for organizations to consistently demonstrate respect for people’s time, work, and expertise by engaging in practices that build ethical, supportive, and mutually beneficial partnerships with PWLE.

 

Find the full survey results in the document linked below.

Appendix: Survey results

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