Expertise or representation: What gives people with lived experience authority and legitimacy in involvement in research?

Abstract

The involvement of people with lived experience makes research relevant and useful to the people it intends to help. How we conceptualise involvement influences every aspect of our approach to it. Over many years, the authors have sometimes witnessed or directly experienced problems caused by conceptualising involvement as being the same as (1) democracy, (2) stakeholder engagement, (3) qualitative research, or (4) “lay” engagement. We see these as distinct activities with different purposes to involvement. While representation (standing in for someone else) is important in these activities, we argue it is not required of people involved in research. We conceptualise involvement as a form of mutual learning. In particular, researchers learn from people’s experiential knowledge, which is knowledge based on the individual’s unique experience, but nonetheless similar to others. This knowledge becomes expertise because it enables people with lived experience to solve problems researchers have with their research. We therefore conclude that the success and quality of involvement depends on involving people with expertise that is relevant to the context. Our concern is that the authority and legitimacy of the contributions of people with lived experience is sometimes misunderstood to be dependent on their representativeness, rather than their expert knowledge. We have seen and experienced that this can lead to negative impacts on the research, and on the individuals involved, especially in terms of the emotional labour required to challenge researchers’ conceptualisations of involvement. We also note that practices to support diversity and inclusion can sometimes be confused with ensuring that an involved group is approaching statistical representation of a population. While we see these as different objectives, we believe all research-related activities need to be inclusive of diverse people. Overall we conclude that a greater understanding of the value of expertise based on experiential knowledge, would help take the onus off individuals to be representative, and give them the authority and legitimacy to speak on their own behalf. The responsibility for successful involvement then shifts to the wider research system to ensure that researchers are seeking, and adequately supporting the involvement of diverse people with relevant expertise.

Plain language summary

The involvement of people with lived experience makes research relevant and useful. How we think about involvement influences our approach to it. Over many years, the authors have sometimes witnessed or directly experienced problems caused by thinking involvement is the same as (1) democracy, (2) stakeholder engagement, (3) qualitative research, or (4) “lay” engagement. We believe these activities have different purposes to involvement. While representation (standing in for someone else) is important in these activities, we argue it is not required of people involved in research. We think about involvement as a way for researchers to learn from people’s experiential knowledge. This knowledge becomes expertise because people with lived experience can solve problems researchers have with their research. Our concern is that people’s contributions are sometimes questioned or even rejected, because they are seen not to be representative. This can negatively impact research and the people involved. We conclude that people’s expertise means they can speak on their own behalf. We also think it important that all research-related activities need to be inclusive of diverse people, which we see as different to making sure an involved group is somehow statistically representative of a population. We conclude that individuals involved in research should not need to try to be representative. Instead the wider research system could support successful involvement by ensuring that researchers are seeking, and adequately supporting the involvement of diverse people with relevant expertise.

Introduction

The involvement of people with lived experience in research is understood to make research genuinely relevant and useful to the people it intends to help [1–3]. Involvement influences all aspects of research, which ultimately leads to better health, better services, better treatments and better quality of care [1–3]. With the goal of delivering these benefits, many research funders in the UK (United Kingdom) now require researchers to involve people in their work, including the National Institute of Health and Care Research (NIHR) and medical charities.

National standards for involvement were established in the UK in 2019 [4], and over 500 pieces of guidance have been written about good practice [5]. However, the purpose of involvement has not received nearly as much attention. We believe this may be contributing to some confusion and inconsistency in how some researchers and people with lived experience conceptualise involvement, and how they understand the way it works.

How we conceptualise or think about involvement is fundamental to our practice, as this sets our intentions i.e. our reasons for doing it. As Lammons argues, our conceptualisation will influence how we carry it out, how we evaluate it, who we involve and to what end [6]. This is more than agreeing what language to use. This is about determining whether involvement will be meaningful and whether it will deliver all of its potential benefits.

Our position

The authors (Lynn and Kristina) have sometimes witnessed or directly experienced problems caused by confusion about the purpose and mechanism of involvement. Lynn has been involved as a person with lived experience for over 10 years, and Kristina has worked to develop involvement practice for over 25 years. We have either taken part, been involved in, or supported a wide range of approaches from citizens’ juries through to involvement in individual research projects.

In our view, confusion can arise because the concept or purpose of involvement is understood to be the same as either (1) democracy, (2) stakeholder engagement, (3) qualitative research, or (4) “lay” engagement, distinct activities we will discuss in more detail below. Where this seems to lead is to a focus on ensuring people are in some way representative of a wider population, rather than consideration of who has the most relevant expertise to contribute. Representation (standing in for someone else) can be achieved in different ways depending on the context (as discussed below) [7]. This is important for some processes and decisions e.g. for priority setting, or service design at population level. However, we will argue representation is not necessary for genuine involvement. It is our view that involving people with relevant expertise is essential to its quality and impact. Without this expertise, there is a risk of tokenism or even harm [8].

Of greater concern to us, is that the valuable contributions of people with lived experience can sometimes be rejected or ignored, because of concerns about lack of representativeness [9]. The authority of those individuals and the legitimacy of their views can be called into question [10]. This not only means that potential benefits from their involvement will be missed, but being undervalued in this way can have negative impacts on everyone involved. For people with lived experience, this can include feelings of frustration, despair of involvement ever leading to meaningful change, and a hesitancy around being involved in future.

In this article, we try to address some of this confusion by describing our own understanding of the purpose of involvement, how this differs from the other kinds of activities listed above. The views we put forward are grounded in the reality of our experience. We are not academics and cannot engage in theoretical discussions about for example, different concepts of democracy. Instead, our intention is to encourage further debate on the issues raised [11, 12] and to share our learning in a way that we hope will support better quality involvement going forward.

We would first like to distinguish representation from ensuring diversity and inclusion, as these are sometimes discussed as being the same. We will then explain how we conceptualise involvement.

The importance of diversity and inclusive practices

We understand diversity to describe a wide range of human qualities, such as age, gender, ethnicity, and beliefs, while inclusion is the act of creating an environment where these differences are welcomed, respected, and valued, and where everyone feels they belong and can contribute fully. We believe that ensuring diversity and inclusion is important for every single one of the activities we discuss in the remainder of the article, including involvement in research. This applies to both people with lived experience and researchers. How to achieve this in practice is beyond our scope. It is an area we believe would benefit from greater clarity, particularly around expectations for diversity and inclusion in involvement, and what changes are required by organisations to truly work differently [13]. From our perspective, this is not the same as selecting people to meet targets based on demographic data, to achieve some kind of representation. Relevant experiential knowledge is essential (see below). We have witnessed some confusion around this, for example when people with protected characteristics have been selected for research involvement roles, without them having any direct or indirect experience of the topic being studied.

How we conceptualise involvement in research: mutual learning

We see involvement in research essentially as conversations between researchers and people with lived experience, that enable them to learn from one another [14]. Learning is the process of acquiring new understanding, knowledge, behaviours, skills, values, attitudes, and preferences. With involvement, this mutual learning leads to concrete changes to plans and actions, and less tangible impacts such as a change in beliefs and attitudes. When applied to research design and delivery, it can lead to changes that improve the quality and relevance of the research [14]. When experienced by researchers, it can lead to profound changes in their priorities, values and working culture [15–17].

With health related research, what people with lived experience bring to the table is their valuable experiential knowledge of a health issue. Experiential knowledge can be defined as “truth learned from personal experience, rather than truth acquired through logic and reasoning, observation or reflection, or information provided by others” [18]. Experiential knowledge tends to be concrete, specific and “common sense”. It is based on the individual’s actual experience which is unique and limited to them, but nonetheless is often similar to the experiences of other people facing the same problem [18].

Experiential knowledge can turn into expertise, when it can be used to resolve problems that other people are encountering [18]. The expert advice of people with lived experience can also be described as wisdom. Wisdom is the ability to use knowledge to make sound judgments and offer foresight, based on reflection and evaluation of life experiences. For example, knowledge is knowing that tomato is a fruit, wisdom is knowing not to put tomatoes in a fruit salad.

How does this expertise – based on experiential knowledge and wisdom - benefit researchers? Because most researchers likely lack experiential knowledge, they can sometimes find they are working with assumptions, that are only revealed to be false through involvement. Like everyone, researchers often “don’t’ know, what they don’t know”. They may need the expertise and wisdom of people with lived experience, both to identify any problems with the design and delivery of their research, and to find acceptable solutions [14]. These may be problems that researchers did not know they had (see Example 1 below). Acting without people’s experiential knowledge runs the risk of making ill-informed decisions. A lack of involvement can thus lay waste to considerable amounts of money, time and effort [19].

Example 1: Involvement in a study requiring people with psychosis to undergo MRI scans [20]

Researchers involving people with psychosis in the design of their study asked for comments on their patient information sheet (PIS). One person with lived experience commented, “It says here you will play music while people are in the scanner. If I was feeling paranoid, I would need to know exactly what piece of music was going to be played, before I’d be willing to take part”. He advised including this information in the PIS. Until learning this, the researchers did not know this potentially crucial bit of information was missing. Although this was the advice of only one person, they still made the change, understanding that this issue could be significant for other people experiencing paranoia. The impact of such changes in a PIS, have been shown to make the difference to whether recruitment to research is successful or not [2, 3].

Importantly, the learning from involvement is mutual. With continued immersion in the research world, people with lived experience learn from researchers about the kinds of decisions that need to be made, and the factors that influence them, thus acquiring a degree of research literacy. Over time, this gives people with lived experience greater insight as to how they can most usefully apply their knowledge to research problems, thus increasing their wisdom in this context. Rather than discounting people with considerable experience of involvement as either the “usual suspects”, or people who are no longer useful because they have lost their “lay” status (see below), we believe the added value of this acquired wisdom deserves greater recognition [10].

Example 1 above and many other case studies of impact [2, 3], illustrate that for involvement to work well, we need to ensure we have the “right” expertise in the room, i.e. the people with relevant lived experience. This is experience that is relevant to the research topic and the nature of the decisions being made [8]. This is completely different to requiring people to be somehow representative, which we will argue is only important in other contexts. We discuss this distinction between involvement as we see it, and democracy, stakeholder engagement, qualitative research and lay engagement in the sections below. Finally, we highlight some of the practical implications of conceptualising involvement as mutual learning rather than any of these other activities.

Conceptualising involvement as a form of democracy

We have seen that involvement is sometimes described as a means to make health research more democratic [21]. However, like involvement, democracy does not have a simple, widely-agreed definition. Some definitions of democracy can be very broad, for example to include “any process that enables all those affected by a decision to be able to influence it” [21]. A concept as broad as this can encompass involvement, and this argument is often used as the moral reason for involving people in research.

However, we find this concept unhelpful in thinking about best practice. From our perspective, defining who is affected by a decision is not always straightforward, since allocating resource to any particular course of action, always comes at a cost to other options. On that basis very many people could claim a right to “have their say”. We find that thinking about involvement in this way, does not identify precisely who needs to be in the room. It also suggests people will be sharing their opinions, views, or voice – rather than their expert knowledge. While anyone can have an opinion (based on many different factors), being able to draw on relevant lived experience requires specific people.

Other more precise definitions of democracy include the various ways in which groups of citizens debate amongst themselves, with the goal of influencing policy and practice, government or otherwise e.g. a Citizen’s Jury [21]. In this context, it is important to address the question of whether the group of people, and their opinions and views, are representative of the wider community. This is often achieved through a system of electoral representation: representatives are elected to speak for and/or make decisions on other people’s behalf. Or representativeness is assured through sortition; randomly selected citizens are recruited to be representative of a population or community.

In contrast, based on our conceptualisation of involvement as mutual learning, we conclude that when people with lived experience are involved in research they are not speaking on behalf of their community. Nor do they need a mechanism for canvassing others’ opinions to be able to speak with authority. They can legitimately speak on their own behalf, by sharing their own expertise, i.e. the knowledge and wisdom they have gained from their own life experience (see above).

Conceptualising involvement as a form of stakeholder engagement

We understand stakeholder engagement to be a tool that can be used to strengthen democratic decision-making (see above). However, we also see it applied in wider contexts, for example to help organisations with public relations and governance [22], and to help with project management. The overall goal is to improve decision-making by considering the interests of all stakeholders, i.e. all the people who have an interest in the success of the organisation or the project.

Stakeholder engagement ensures that: (1) any decisions made are less likely to harm stakeholders’ interests; (2) governance is improved by increasing transparency, accountability and ethical conduct; (3) decision-makers build stronger relationships with stakeholders, as well as gaining credibility and buy-in; and (4) organisations/ individuals improve their reputation and increase their ability to respond to the outside world. Ultimately, decision-making requires balancing the interests of different stakeholder groups, and reaching consensus on solutions that address everyone’s concerns, at the same time as achieving the intended goals.

The process of stakeholder engagement often involves hearing from large numbers of people e.g. through surveys or workshops, and then relying on individual representatives to negotiate final decisions. A stakeholder representative is someone who is chosen or elected to voice the interests, needs, and perspectives of a broader group. They may act as a communication link, communicating back and forth between their peer group and the people making the decisions. One way we have seen this work in practice is that an advisory group of a large number of people with lived experience send one or two representatives to attend a decision-making body.

In our view, the purpose of stakeholder engagement in research is to find out about the interests and concerns of all the people affected by the research and agreeing ways to get buy-in or approval for the research going ahead and/or being implemented. It requires negotiation of the conditions for any endorsement. Representation is important here, in providing a mechanism for communication between the different interested groups.

As discussed above with the case of democracy, we therefore see stakeholder engagement as a process with a very different purpose and outcome to involvement in research. We have also noticed that some organisations say they are involving people with lived experience, when in practice they are actually engaging them as stakeholders. The organisation has no clear intention of drawing on people’s expertise to make change, instead wishing to consult them to seek approval or to find a way to gain endorsement for a planned course of action [22].

Conceptualising involvement as qualitative research

We understand the purpose of qualitative research to be to gain an in-depth understanding of an issue by exploring concepts, opinions, and experiences through the collection of non-numerical data. Some researchers seem to approach involvement as a form of qualitative research, setting up focus groups or interviews as Papoulias and Brady have reported [13]. For example, researchers may come to a meeting with people with lived-experience with a topic guide, ask a fixed list of questions, and record and transcribe the discussion. They then analyse the information like data, without further input from the group they have worked with. This contrasts with the concept of involvement requiring exploratory conversations to support mutual learning [23], where the outcome can be unpredictable and unexpected, so that it is not always clear exactly what questions to ask in advance [14]. Such conversations need to support an open exchange of ideas and allow two-way question and answering, to enable people with lived experience to identify where researchers are missing information or making assumptions. The learning often occurs in real time during the dialogue, providing researchers with moments of insight they describe as a “lightbulb moments” [24].

Another misconception that sometimes arises in this context, is that some researchers believe that the group of people with lived experience they work with somehow needs to be a representative sample. Borrowing from quantitative research methodology, it is sometimes thought that the group needs to approach statistical representation of the wider community or population, based on key demographics such as age, gender, and ethnicity. We see this most often in relation to standing advisory groups designed to be consulted by multiple researchers, where confidence in the authority and legitimacy of the group can come from their “representativeness”. However, we have also seen this cause problems when the group is asked about research on topics where none of the group members have relevant lived experience [20, 24].

The differences and similarities between qualitative research and involvement have been previously discussed [11], and summarised by Hanley et al. (2019) [25]. Based on our conceptualisation of involvement, we see the main difference to be that qualitative research often generates data that may be generalisable, whereas involvement generates learning that may only be useful to an individual within the context of their project (see Example 1). The learning is often subjective. Different researchers may not have the same gaps in their knowledge or may not be working with the same assumptions [14], which means that no one can do the researcher’s learning for them, (in contrast to collecting and sharing data). Ideally, learning conversations need to happen between the people with lived experience and the actual researchers making a decision, rather than other people, such as Patient and Public Involvement (PPI) Leads (staff in professional PPI roles), ”doing the involvement” on the researchers’ behalf [13].

Conceptualising involvement as a form of “lay” engagement

A “lay” person is someone who is a non-expert. In the case of research, this is someone who does not have technical knowledge of research processes. Anyone who is not a researcher is “lay”, which includes very many people. So again, if involvement is understood this way, it does not precisely define who needs to be in the room.

We see that lay engagement is often considered for one of two reasons, either (1) to help produce a lay version of technical information, or (2) to improve transparency and accountability by providing an “outsider” view of any decisions being made. These will be considered in turn, in terms of how they relate to our conceptualisation of involvement as mutual learning.

Firstly, a lay review of technical information will ensure that the information is understandable, clear and jargon free for non-experts. However, based on our conceptualisation of involvement, we see the review of any information to have another goal: to ensure it is also relevant to the target audience. This may mean adding additional information, that only people with lived experience would know to be significant (see Example 1). A lay person who lacked this experiential knowledge might be in the same position as researchers, not realising that key information was missing [8].

The second purpose of lay engagement can be to bring the perspective of non-experts, as outsiders, to challenge the thinking of an insider-group. Insider group thinking carries the risk of poor decision-making, if all group members are working with the same false assumptions, or if group members feel the pressure to fit in, or conform with group norms. However, this concept does not distinguish between very different categories of outsider – citizen, stakeholder, person with expertise from lived experience – and the different kinds of contributions they can make. We therefore find this concept of “lay” engagement unhelpful, as it does not clarify the roles and expectations of the people who are engaged [8, 12].

Finally, this way of thinking can lead to challenges around defining who has “lay” status. People with lived experience who gain knowledge of research through involvement (see above) can find their contributions being questioned, as they may be perceived as no longer being “representative” of lay people [26] having gained some technical understanding. This again can be seen to undermine their authority and legitimacy. Such misunderstandings risk excluding the people who have gained a level of wisdom and experience that would make them ideally placed to work with researchers in more strategic roles e.g. as co-researchers. Furthermore, to limit people’s contributions to their “lay” perspective is to fail to recognise the expertise they can also offer based on their experiential knowledge.

Practical implications

Conceptualising involvement as mutual learning, rather than these other kinds of activity, has implications for day-to-day practice. It affects recruitment, support and training, the approach used and wider systemic challenges, as discussed below.

Firstly, recruitment to involvement requires researchers to identify who has relevant lived experience. Most often this is people who have direct or indirect experience of the research topic being investigated [8]. Importantly people with this expertise can help to identify who else needs to be involved, and may challenge researchers’ assumptions about whose experience is most relevant [8]. Therefore this needs to be a collaborative process.

Preparing people for working in this way requires support for people with lived experience and researchers. People with lived experience are likely to benefit from a deeper understanding of their expertise and how it helps researchers. They may also usefully develop the skills of being a critical friend, learning how to draw on their lived experience to influence and persuade, rather than simply to “tell their story” [27]. Researchers are likely to benefit from a deeper understanding of experiential knowledge and how to work with it, which is distinct from working with data [25]. Some might also benefit from being prepared to receive criticism and to see this as constructive, as well as learning how to respond positively, rather than becoming defensive.

Approaches to involvement that support mutual learning, are likely to put more emphasis on the quality of the interaction and the factors that enable knowledge exchange through conversation [23, 28], rather than any particular “method”.

Finally, we are aware that a shift in this direction challenges deeply held values within the research system (the set of institutions, policies, people, culture and funding that manage, deliver and disseminate research) [22]. Researchers who choose to work in this way may find themselves challenged by expectations of “representativeness” from other parts of the system e.g. funders and ethics committees. Clarifying whether this is a genuine call for representativeness, or in fact for diversity and inclusion, is important in the first instance. Thereafter, we believe there is a need for more system-wide conversation around this topic of representativeness and expertise to support the culture change that will underpin future meaningful involvement.

Discussion and conclusion

In this article, we have described our working definitions of the different ways researchers can work with people with lived experience: involvement, democratic decision-making, stakeholder engagement, qualitative research and lay engagement. Our goal has been to distinguish involvement from these other activities, focusing on their purpose and appropriateness in different contexts. We believe it essential to highlight these differences, so that in any given situation, everyone can be clear and precise about their intentions, expectations and definitions of success.

We note that the practical steps made to deliver any of these activities can look very similar i.e., set up a group, and/or invite two people to join a decision-making body, so clarity of purpose does not come from the process alone. If the purpose is clear, it becomes easier to select the approach that is both fit for purpose and appropriate for the context. This includes the nature of the decision being made. For example, setting national policy on the use of NHS data might benefit most from a form of democratic decision-making such as a citizen’s jury. Making policy decisions about how to use health data stored on a particular database, might benefit most from stakeholder engagement in the form of a mixed stakeholder advisory group, including researchers who want to use that data. Designing a research project that uses the data to study a particular health condition would benefit from involving people with lived experience of that condition. We have experienced these very different kinds of activity all being described as involvement in health data research, without clarity about who is being involved and why.

Conceptualising involvement as being the same as these other types of activity, leads to what we perceive as a misunderstanding about the need for representation. The emphasis might then be placed on collecting representative views, experiences, opinions and perspectives, rather than seeking the input of individuals’ knowledge and expertise. This can sometimes mean the people selected for involvement do not have relevant lived experience, limiting their potential impact. We are concerned by recent developments in the involvement field, that appear to be informed by this misunderstanding, for example a project to develop “AI-simulated and demographically representative patient and public involvement and engagement panels to ensure faster and unbiased feedback on research proposals” [29].

We note that any individual can be a lay person, a citizen, a stakeholder and a person with lived experience and therefore needs to know what role they are being asked to play in any given situation. Then they can feel certain they are making the most useful and relevant contributions. We are uncertain whether people with lived experience are always informed of these differences, or have instead been encouraged to conform with roles that might limit their influence [10]. How often do people get involved in defining the purpose of their involvement role? In our experience, this is not often explicitly discussed. This can lead to considerable emotional labour on the part of the person with lived experience, either trying to find ways to fit in, or challenging the role as imagined by a research team.

Any mismatch between researchers’ understanding of involvement and its purpose, and that of the people with lived experience, can cause upset and frustration all round. For example, Lynn (co- author) has experience of being invited to be involved in research, only to find she is instead taking part in a focus group, being asked a series of questions about her lived experience, rather than being expected to offer critical feedback to shape research based on her expertise. For this reason, she is increasingly careful in her selection of potential involvement opportunities and prefers to work with researchers with whom she has built relationships based on mutual understanding and respect.

In conclusion, we suggest that more attention and emphasis should be given to understanding the value of experiential knowledge, for example, investing in training and development for researchers and people with lived experience. Researchers might benefit from greater clarity around how to work with experiential knowledge, and how to select and involve people who have the most relevant experience to contribute. People with lived experience might benefit from clarity around how to draw on their wisdom and expertise to act as a constructive, critical friend to researchers.

As Shloz has described [30], we hope that this greater understanding of the importance of relevant expertise would help take the onus off involved individuals to be representative, and might also stop others questioning the authority and legitimacy of their contributions. We believe that the responsibility instead lies with researchers and the wider research system, to ensure researchers are seeking and adequately supporting the involvement of diverse people with relevant lived experience. Who else in the research process is asked if their views are representative?

Abbreviations

NIHR

National Institute of Health and Care Research

PPI

Patient and Public Involvement

UK

United Kingdom

Author contributions

Both authors have either been involved in research as a public partner and peer researcher (LL), or supported and promoted involvement in research (KS) for many years. Both have drawn on their considerable experience and expertise to provide different perspectives on the content of the article. KS wrote an initial draft and LL helped to redraft multiple versions to develop the content and to agree the conclusions and key points. The article provides a synthesis of our collective experiential knowledge of involvement and issues being discussed amongst the wider involvement community.

Funding

Neither author received any funding to work on this article.

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval and consent to participate

Not applicable.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.