Abstract
This paper draws together critical learnings from diverse qualitative health research projects in Australia that sought to shift power and focus on the strengths and expertise of people with lived experience who are involved as co-researchers. These projects have included exploring and challenging identities, understanding experiences in treatment programs, critiquing and designing/re-designing services, and sharing experiences with the wider community in novel and innovative ways. Lived experiences included alcohol and other drug dependency, mental health, domestic, family or sexual violence, and living with HIV. This paper provides important learnings and actions about partnering with co-researchers with lived experience. In this paper we draw on a process of reflective discussions that occurred over six months with fortnightly online meetings between co-researchers, including co-authors with lived experience external to academia and university-based researchers, some of whom also have lived-experience that intersects with their research. From this, we distilled key learnings across seven themes: (1) the ethics of ethics, which highlights a need for constant reflection on the ethical issues in co-research; (2) recruiting co-researchers, which focuses on ensuring and integrating a diversity of voices; (3) creating safety for all, which must be a priority of engagement and support self-determination; (4) supporting different ways of partnering, which emphasises the need for diverse roles and ways to contribute on research teams; (5) capacity building and training, which requires ongoing evaluation of needs and tailored responses; (6) positioning, which highlights the need to transition from the idea of vulnerability to a strengths-based perspective of lived experience; and (7) power plays, reflecting the need to disrupt the dynamics and established hierarchies of privileging certain forms of knowledge and expertise. The paper includes recommendations for action against these seven themes.
Introduction
Qualitative research across many disciplines focuses on co-construction of meaning with participants and to varying degrees can aim to redistribute power (Karnieli-Miller et al., 2009). Engaging people with lived experience as partners in projects is also becoming increasingly common in quantitative research, including biomedical and health services research (Kaida et al., 2019; Saini et al., 2021). While there are a range of collaborative approaches - such as community-based participatory research, participatory action research, inclusive research, decolonising research, and patient and public involvement in research, to name a few (Wiles et al., 2022) - practices to operationalise the centrality of consumer/lived experience voices vary widely. The most equal partnership is often found in research where those affected are included as co-researchers alongside university-based researchers from the outset. This approach involves determining the research focus together and sharing power in decision-making throughout, including in dissemination and knowledge translation (Karnieli-Miller et al., 2009; Wiles et al., 2022). The level of agency and involvement in the research for people with lived experience, and even the framing of the research questions, can inadvertently reinforce discrimination or it can provide the setting for building confidence, self-esteem, capacity and career opportunity for people with lived experience (Werner-Seidler & Shaw, 2019).
The South African disability rights movement coined the phrase, “Nothing About Us Without Us” in the 1990s in their efforts to overcome systemic oppression and enable people with disabilities to have greater control over decisions affecting their lives (Charlton, 1998). This principle is similar to the Denver Principles developed in 1983, from which HIV activism was built, which stated: “We condemn attempts to label us as ‘victims’, a term which implies defeat, and we are only occasionally ‘patients’,” a term which implies passivity, helplessness, and dependence upon the care of others. This activism led to the Greater and Meaningful Involvement of People Living with HIV (GIPA/MIPA) principles, as part of the 1994 Paris AIDS Summit, which emphasise self-determination and participation in decision-making. Since the 1990s, people who use illicit drugs, people with hepatitis C, people with mental health issues, survivors of gender based and domestic violence, and other groups have embraced these principles to different degrees (Brener et al., 2022; Faulkner & Thompson, 2023; Hague & Mullender, 2006; Rhodes et al., 2010). Co-researching with people with lived experience has often drawn on these movements with service users and survivors arguing for greater levels of involvement in research as a key basis for the construction of knowledge that underpins policy and practice (Goodman et al., 2018; Perot, Chevous, & Group., 2018; Rhodes et al., 2010; Wallcraft, Schrank, & Amering, 2009). In addition to a rights framework as a rationale for involvement, there is increasing evidence of the value of lived experience research in improving both the methods and data quality from research as well as its relevance to improving people’s lives by informing more effective services and supports (Brett et al., 2014).
The term ‘lived experience’ has its origins in phenomenology, though historically it has been focussed on participants as the ‘subject’ of research rather than as active contributors throughout the research process (Frechette et al., 2020). Lived experience researchers or co-researchers are defined, for the purposes of this paper, as people who carry out research with knowledge and experience gained when they have lived or are living through a particular health or social issues, such as people living with HIV or survivors of domestic violence. According to Gupta and colleagues, “the lived experience researcher role requires the researcher to draw on their lived experiences in the research they conduct and through which they interpret data, working in professional and academic contexts” (p. 3) (Gupta et al., 2023). Co-research with people with lived experience can also be distinguished from consumer engagement more broadly in the health literature with the focus often on a range of strategies for ‘involvement’ which often fail to share real power in service design/re-design or in research (Wiles et al., 2022). Wiles and colleagues concluded in a recent systematic review that “most consumer engagement strategies adopted a consultative approach.” (p. 1) (Wiles et al., 2022). Co-research with people with lived experience shares many core principles with other participatory approaches such as community-based participatory research and participatory action research, which are well-established methodologies that came from critiques of conventional research paradigms that did not engage or benefit communities (Minkler, 2005; Viswanathan et al., 2004). It is also noted that university researchers can and do have lived experience though how visible they choose to make this experience is individual and often influenced by institutional norms and expectations.
Much has been discussed regarding the benefits of moving research from a positivist approach where people with lived experience are ‘objectively’ studied, to a more participatory and reflexive process that involves both critical self-awareness from researchers and inclusion of people with lived experience as producers of research (Lamb et al., 2020, 2023; Nnawulezi et al., 2018; Råheim et al., 2016; Rhodes et al., 2010; Saini et al., 2021; Wallcraft et al., 2009). As in many countries, research funding agencies are also increasingly requiring engagement with consumers and community in research (National Health and Medical Research Council, 2016; National Institute for Health Research (NIHR), 2023). However, there are many barriers to overcome for real power sharing to occur in research with people with lived experience, particularly when they have a history of trauma and/or face stigma and discrimination in accessing health and social care services. In these contexts they can be positioned as ‘vulnerable’, as lacking ‘capacity’ to contribute and to be protected rather than engaged in research (Nyklova et al., 2023; Sterie et al., 2023).
The aim of this paper, based on a critical reflection process (Brookfield, 2009; Fook, 2011) is to distil key learnings in co-researching with people with lived experience about barriers and facilitators to meaningful participation in co-research and ways to foster sharing of power with the following specific research questions: 1) How can a shared space for discovery across the research process be created and supported? 2) How do we shift power and focus on the strengths and expertise of people with lived experience in research? 3) What are the approaches to ensure emotional safety?
Methodology and Methods
We used shared critical reflection in online group discussions as a methodology to explore our collective experiences of undertaking qualitative research in a collaboration of university-based and lived experience researchers (Brookfield, 2009). The process involved considering the impact of the hegemonic assumptions inherent in academic research, in particular health research, and challenging the limitations these imposed. This included identifying the ways we as a team of university-based and lived experience co-researchers and practitioners had re-distributed power and supported meaningful collaboration in research. Within our team, several of the university-based researchers also identified as lived experience researchers and/or have lived experience relevant to their area of research. Critical reflection as a research methodology is becoming increasingly used as way of learning from experience in the research field (Cullen, Dawson, et al., 2021; Lekkeh et al., 2023; Råheim et al., 2016) drawing on its well-established use as a tool in professional learning settings (Fook, 2011).
The initial idea for this paper was proposed by X to colleagues who had worked closely in research with people with lived experience where trauma and/or stigma were part of their experience, in both research and in accessing health and social care services. University-based and lived experience co-researchers were invited to contribute to the data collection and writing of this paper drawing on our collective experiences via recorded group reflective sessions online.
There were four areas of our research that were the focus of the critical reflection sessions were (1) the experience of young people in accessing mental health services; (2) experience of young people in a drug and alcohol treatment service (Dixson et al., 2018; Fredrickson et al., 2019; Rawstorne et al., 2020); (3) research projects addressing prevention and responses to domestic, family and sexual violence (Cullen, Stevenson, et al., 2021); (4) a project with woman living with HIV in Australia using art as a form of expression of their multi-faceted lives (Carter et al., 2023). The common element to each focus area were the challenges lived experience co-researchers had experienced in being equal partners in previous research due to stigma about their condition and lived experience, including being positioned as ‘vulnerable’ and as lesser partners in the research process. The diversity of focus areas was important in the process of critical reflection to examine common and divergent experiences across the range of projects, issues, and settings.
Author Team
Our authorship team is made up of diverse group of co-researchers, some with lived experience of the research they are involved in, and some without. Our ancestry is in majority white and British, but also includes ancestry from Aboriginal, Arabic, Pacific Island, southeast Asian, western and eastern European background. We share heterosexuality, and all identify as either a cis gender man or women. Our ages range from people in their 20s–60s. We all live on unceded Aboriginal land, including, Bidjigal, Turrbal, Gadigal and Dharawal Country. Most of the team have a postgraduate degree, and all but one of the team members have an undergraduate degree. Our lived and research experience is drawn from health and social contexts ranging from child sexual abuse, childhood and adult domestic violence, alcohol and other drug dependency, mental health, and HIV. All of us bring experiences of either lived experience or collaborating with researchers with lived experience to this work. Our involvement in this paper echoes our strong desire for lived experience to be properly integrated into research and the provision of care, making both more accessible, approachable, powerful, and personal.
Data Collection
Questions to Guide the Six Critical Reflection Sessions.
To navigate the power dynamics among our team it was vital to first and foremost create a space where hierarchy and ego were left at the door. While X led the creation of the paper, everyone was treated equally and invited to contribute in their own way, at their own pace. The reflection sessions involved an unspoken commitment among participants to listening carefully to others, self-reflect, and appreciate the limitations of one’s own knowledge and insight. The leadership of X and make up of contributors with extensive experience in lived experience research made this navigation of power easy and implied. Future research that chooses to emulate this approach, particularly for those without the same level of experience, may need to be more explicit about establishing spaces conducive to safe and effective reflection and discussion
Analysis
The analysis of our collaborative discussions was largely an inductive thematic analysis (Terry, 2017) sensitised by the research questions. Following the reflective data collection sessions, subsequent team meetings were used to collaboratively consider the data and we worked together to code the first three reflective meeting transcripts culminating in an agreed coding framework. The first LD and second SN authors then coded the remaining meeting transcripts using the coding framework. A further meeting of the author team agreed on the most salient themes to progress for the paper with seven candidate themes identified, and these were continually refined in subsequent meetings.
Although different questions were posed for each weekly reflection session common themes were found across the six reflective discussions with repetition of ideas and concepts that were subsequently agreed as the most salient themes. These themes also had the most coding re-affirming their focus for this paper. In the approach to data analysis the team stepped through the three-stage process outlined be Terry et al. (Terry, 2017) including familiarisation by discussing and making casual observational notes on each transcript followed by coding and theme development. Data segments were coded using NVIVO and often to more than one code. The process was iterative with data coding often resulting in code revision, development and re-naming. In self-selected groups of two or three, the coded data was written up into the seven agreed themes. The full draft of results was combined by X and Y with subsequent feedback from all authors. The writing up process was highly collaborative through online discussions and a shared draft of the paper being reviewed, edited and revised by the authors. This collaborative and iterative writing up process, including the distilling and sharpening of key themes, was a key mechanism to reach consensus on what was ultimately presented in the manuscript. A number of further online sessions were focussed on these discussions with space provided for everyone to contribute their views.
Findings
Our key findings are focused around seven themes: (1) the ethics of ethics, which highlights a need for constant reflection on the ethical issues in co-research; (2) What does it mean to “recruit” co-researchers, which focuses on ensuring and integrating a diversity of voices; (3) creating safety for all, which must be a priority of engagement and support self-determination; (4) supporting different ways of partnering, which emphasises the need for diverse roles and ways to contribute on research teams; (5) capacity building and training, which requires ongoing evaluation of needs and tailored responses; (6) positioning, which highlights the need to transition from the idea of vulnerability to a strengths-based perspective of lived experience; and (7) power plays, reflecting the need to disrupt the dynamics and established hierarchies of privileging certain forms of knowledge and expertise. In response, we make recommendations around dedicating research time and resourcing to building trust and rapport, investing in tailored person-centered capacity building, providing diverse options for participation, adequately valuing and compensating co-researchers including through career development, and creating a welcoming research environment that prioritises psychosocial safety and power sharing.
The Ethics of Ethics
Through discussing our various projects, we found that co-researching health and social issues with people with lived experience requires ongoing reflection and discussion about the ethics of processes and practices in a research project over time. Research involving co-researchers with lived experience raises different ethical questions and considerations than traditional approaches to ethics that view people with lived experience through a ‘naïve’ participant lens. Co-research inherently creates tension between the traditional and more procedural ethics focus of human research ethics committees. It requires a more situated approach of ongoing reflection and discussion about the ethics of processes and practices throughout a research project. A situated ethics, “acknowledges the uniqueness and complexity of each situation and any ethical decision needs to take cognisance of the precise way in which many… factors are played out in the specific socio-political context” (Piper & Simons, 2005).
In our experience, human research ethics committees are becoming more knowledgeable and comfortable with participatory research and involving co-researchers with lived experience, evidenced by ethics committees ‘asking the right questions’. However, there remains a lack of institutional knowledge and understanding of the situated nature of co-research. Ethics committees may not have a deep understanding of the array of concerns: They’re not thinking about ethics as an unfolding, particularly when you’re co-researching and giving autonomy, that it’s a constant reflection on is what we are doing ethical?
It was our shared experience that procedural ethics often starts from a paternalistic, deficit approach rather than a strengths-based approach. This was reflected in ethics committees’ emphasis on risk management often resting on the assumption that lived experience means by definition that you are vulnerable, fragile or unable to speak about issues without causing ‘distress’. Efforts to avoid dangerous emotional terrain and maintain confidentiality also assume co-researchers have limited power. We believe that this type of research instead needs to start from “the assumption that co-researchers are capable and intelligent people who wouldn’t fall apart at the mention of the topic they hold lived expertise in.” Ethics committees’ responses also often assumed that the university-based researchers did not have these lived experiences. Instead, ethical review process should include reflective questioning for those proposing co-research, including about how power will be shared, and ways to maximise contributions from lived experience researchers.
What Does it Mean to “Recruit” Co-Researchers?
Across all our studies, another key theme was the importance of ensuring and integrating the diversity of community voices in co-research. However, this was not without its challenges. There are questions around how traditional concepts of recruitment apply in the context of co-research, and in particular differences in the relational aspects that are essential in engaging people in co-research and cannot be arms-length. We found that in recruiting co-researchers it was important that there were clear benefits for themselves and the broader community. A challenge we discussed at length was ensuring some level of ‘representativeness’ of lived experience more broadly; with lack of resources and time dedicated that go beyond established norms of research recruitment which can be a substantial barrier to equitable lived experience co-researcher participation. I struggle with the idea that they don’t necessarily represent what we might call the blind spots, people who aren’t able to participate because of their social circumstances.
We acknowledge the inherent slipperiness of the concept of ‘representativeness’, that is the problematic notion that individual co-researcher experience is ever truly generalisable or able to represent the diversity of lived experience. Some of us reported difficulty in recruiting co-researchers who aren’t already significantly engaged in employment in health and other services or who haven’t participated in research over an extended period. This suggests attention is needed to create a safe and accessible environment for participation for people who don’t already have a good understanding of health systems or universities: I think we probably didn’t have the right people on the team to create that culturally safe environment and support recruitment of those voices.
Others shared their view that people who understand research and the way universities operate do not ‘lose’ their lived experience, but rather become more expert in operating effectively with their lived experience as an anchor for their contributions to the research process. While challenging, there were many strategies that we have found can improve recruitment of co-researchers in participatory research and support them to be able to share a wide range of views and experiences from others with lived experience, including having established networks to tap into to represent a diversity of voices which we detail in our recommendations section.
Creating Safety for All
In research that works collaboratively with people with lived experience, the researchers’ sense of safety, particularly psychological safety for both lived experience and university-based researchers, must be a priority of engagement. As people with lived experience can often face oppression, discrimination and violence, we agreed that research approaches must invest in relationships beyond the transactional to establish and build trust for open and meaningful collaboration.
Investing in building meaningful and trusted relationships must be a key focus from the outset and remain a priority throughout research, which is well illustrated in what was shared about the art project with women living with HIV: We engaged in on-going discussion and debriefing to ensure we stayed true to these principles of meaningful engagement throughout the life of the project with women living with HIV. Our first session together was just all about connectivity. We didn’t do any research. It was about coming together and meeting with one another. Also meeting a counsellor who is going to be support system for us on our journey… we spent a considerable amount of time preparing for the workshop series including the design of an ethics of care policy, identifying and confirming counselling and support resources, the creation of a private Facebook page, a detailed Participant Guide, and a visual library of imagery for workshop sessions.
Experiences in research about domestic and family violence further underscored the importance of establishing trust and safety, not only between lived experience researchers and university-based researchers, but also between lived experience peers. This includes setting up expectations of ways of working together, respecting the diversity of views, and being willing to learn from each other in the context of having a common goal: Not being overly righteous and easily taking offence... let’s stop othering each other…thinking I'm better than someone else or that other person’s wrong. I think anything that allows self to be expressed without worry about judgment... people may use different language, but we are here for a common cause, let’s extend to other people that sort of sense of grace…as opposed to getting caught up in the politics…it’s just really important that people feel safe to express themselves.
The creation of a safe environment for lived experience co-researchers was a strong theme across our discussions. This starts with building relationships and extends to ways to create safety in the physical and psychosocial spaces where research is conducted and managed. Working spaces, both physical and online, need to be welcoming and this includes acknowledging Country, explicitly valuing and naming lived experience as central to research, ensuring psychosocial safety, providing food and other refreshments, and warm hospitability. Creating safety takes time and ongoing attention is needed to ensure people feel included, safe to express themselves without fear of judgement, are provided with information about what is expected throughout the research process and have real opportunities to contribute. Content that may speak to past traumas also needs to be introduced carefully alongside providing access to supports. The importance of agency in creating safety was discussed often and evident in all the projects we reflected upon. This was multi-faceted and included how much people wanted to share, what roles they felt comfortable taking, and how they wanted to be identified or not in the research outputs. How people want to be recognised or not recognised in projects… that’s a big thing that comes up for domestic, family and sexual violence victim-survivors because some of them have real safety concerns and can’t be identified. Some people want to remain anonymous. Some people want to use a pseudonym, some want to use their first name. Some people want their whole name and are comfortable with that and want recognition.
University-based researchers need to support and enable co-researchers to make informed choices about research participation, especially concerning potential consequences and risks to being identified in the public arena. This was particularly important in the context of the discussions about research with women living with HIV, or people who have experienced domestic, family or sexual violence or drug and/or alcohol dependence. Nevertheless, sharing experience publicly can be healing and empowering and should be supported wherever possible to work against silencing of people with important experiences to share. Some even decided to use their real name or show their face, as a way to stand up to stigma. But online environments can be hostile and there is always a concern in the back of my mind that community participants can be left more vulnerable and marginalised in sharing such personal stories publicly.
Supporting Different Ways of Partnering
In research that seeks to include and share power with people with lived experience, it is critical to allow for different modes of engagement that are self-determined and of greatest benefit to the co-researcher and the research. We focused on the diversity of experiences and capabilities that lived-experience co-researchers bring, and the different ways of engaging and different supports that may be needed to ensure person-centered meaningful approaches. Age, gender, children, culture, and life course, for example, were important factors that we considered in our projects. Further, engagement for the same person may evolve over the life of a project alongside a person’s growing expertise. The evolving and continuing careers of co-researchers in health and universities were seen as a sign of success for participatory research and to be celebrated as a key impact of the work, rather than viewed as them becoming less able to contribute from a lived experience perspective.
Many examples of engagement structures that are flexible and where different levels of involvement can be accommodated were put forward in our discussions to meet different situations, and to avoid making assumptions about availability, “we sort of expect an awful lot from women. They’re already caregivers themselves. They’re often working… understanding that not everybody does have that time.” The demanding nature for those participating in terms of time as well as physical and emotional effort was shown to be a persistent barrier to engaging diverse voices. For some lived-experience co-researchers, ongoing and consistent engagement is sought, including a formal, long-term opportunity for work or a career. For others, more periodic participation may be preferred, especially if juggling other jobs, providing care for loved ones, or caring for themselves. Some were involved as co-investigators helping to drive the agenda, design the materials, recruit participants, co-facilitate sessions, analyse and co-author papers. Others were engaged in more ad hoc roles, where they helped engage and support participants and participated in discussion and interpretation of findings for papers and presentations. Others participated in Advisory Board meetings, which were twice annually, providing input on overall study conduct. All were paid for their time.
The experience in all our projects illustrated how important flexibility in roles and forms of engagement are to meaningful participation, but also the need for on-going negotiation of how people with lived experience can contribute over time: We made sure that there was a diversity of different experiences, but people very much were on different stages of their journey…so in terms of this type of project, so some people, it was the first time they’ve done something like that. I’ve always just found it really difficult with young people, just because I think the mechanisms of involvement just don’t always resonate with them… most of the ways young people engage today is in a virtual world. And I don’t know that we’re harnessing that very well to engage them as co-researchers. The young people I’ve worked with, I can’t see them on a zoom call with a whole lot of academics.
Arts-based methods was another way we found allowed for meaningful engagement of people with diverse lived experience as co-researchers. These were used across many of our projects to remove barriers to contributing lived experience (such as language or physical ability), and to make the invisible visible, including photography, process art, and vignettes.
Capacity Building and Training
Central to meaningful participation for lived experience co-researchers is building co-researchers skills and confidence to express their views and influence decision making at all stages of the research process. We reflected on the many times the real power within a project remains with the chief investigators. In our experience some projects lack formal structures for orientation, training, and support: That sort of notion that they’re going to say or do the wrong thing and that they’re not going to be academic enough. What we do need to do is build capacity around members with lived experience to be able to contribute more meaningfully to research.
We have found enabling people with the skills to participate meaningfully in research requires ongoing evaluation of their training needs and tailored responses to meet these needs. It’s not something you can just have a once off educational workshop session and expect that person to feel confident. So, for me, you know, this came out strongly that people need someone to help them navigate.
Depending on the project, this could involve on-going capacity development across a range of topics, including both traditional topics related to research methodology such as ethics, recruitment strategies, interviewing practices, data quality, knowledge translation, community-based research principles, plus other domains of significance to the topic such as trauma-informed practice, navigating patient/researcher roles, unlearning prejudices, strategies for self-care, diversity of participants, and power in research teams.
Walking alongside and learning from each other was a recurring theme across our different projects, populations, and settings: Allowing people a chance to do it … giving someone a chance to do interviews and then sit down with me and look at the transcripts and talk about what was interesting. And it was a long process. It wasn’t just here you go, you go and do it. It was that sort of working side by side.
In this way, capacity building was a two-way street, marked by reciprocity or the exchange of knowledge and skills between university-based researchers, or other ‘professionals’, and people with lived experience. The lived experience members of our authorship group (including university-based researchers) shared how they built valued research capacity for themselves and their organisations and had access to opportunities that they had not considered for themselves before, such as employment in academia or undertaking postgraduate studies. University-based researchers in turn learned from each person’s lived experience, which shaped and enhanced the quality and relevance of research, ultimately making the research outcomes richer: We went through it in the workshop and then we basically went through transcripts together and coded them and what they saw in that data was so different from what we would have seen if they hadn’t been involved.
Through our process, we discerned that an ultimate aim of co-research would be for people with lived experiences to drive the research agenda and the approach, with researchers stepping back and just being there to guide. We believe this intersects with the notions of power and position.
Positioning
Situating people with lived experience as agents of research is vital to combat experiences of being treated as the problem, as vulnerable or as victims. This requires a transition to a strengths-based approach that enables co-researcher agency. The lived experience co-researchers expressed awareness of societal norms and stigma being replicated in research processes that infantilised people with lived experience through paternalistic protective approaches to managing their involvement. Lived experience of the research subject matter was at times perceived as a weakness or personal fragility, problematising the individual rather than critically analysing the systemic or structural factors that are at play: So much research is done around us as victims. There’s a loss of agency because of that, we’re positioned as not being able to speak for ourselves. I think from a people living with HIV perspective or women living with HIV, the vulnerability is also very much assumed, and it always approaches lived experience from a deficit. We don’t frame it as a systems problem. And so that then has this whole cascade of effects on people’s experience of being in research as co-researchers that they’re positioned from the get go as being the problem. If you’ve got the question that is problematising someone and framing them as the problem, it doesn’t matter what method you use, you’re not going to actually uncover strengths.
Having lived experience identified roles in research, such as co-investigators or advisers, allowed people to give voice to their own and others’ experiences, to shape research relevant to people’s lives, and not feel misrepresented in research outputs. In our experience, starting with lived experience and community-led research supported recognition of those with lived experience as multifaceted ‘whole’ people, and assisted adoption of a strengths-based models of researching, and promoted people with lived experience as having unique value in research: You can take a strength-based approach within quantitative research as well and I’ve done that in many of my projects looking at sexual health and pleasure and relationships and love with women to be with HIV and many of those studies. These were research priorities that came from the community if you go to the community, their research priorities are more in a strengths space, whereas if it comes from researchers, it’s more problem based.
Positioning was also seen as highly relevant to university-based researchers whose lived experience intersects with their research. We noted the diverse circumstances in which lived experience researchers make visible their lived experience in their work, and how they position themselves in relation to their lived experience within academia. Another potential risk is to the psychological safety of lived experience researchers sharing personal details within a workplace, potentially blurring personal and professional boundaries. As one lived experience researcher describes “work has been my safe place, where I can feel capable and respected, and put aside parts of myself and my experience that are difficult – in some ways this has been undermined the more my research has intersected with my lived experience”.
This reinforces the importance of having processes and systems in universities that are supportive of lived experience researchers who are navigating the complexity of bringing their personal and professional identities together to enrich their research. We reflected that situating people with lived experience as agents of research provided greater opportunities for richer research outcomes, to find solutions and understand what works for the people most impacted by the research topic. Conversely, limiting the agency of people with lived experience to participate in co-production and drive research can stifle and fail to challenge established norms or paradigms that may be unproductive or harmful: The system allows people to be problematised or stigmatized or treated as vulnerable, or victims. And so, I think there’s something from the deeply individual and personal through this systemic where we move, reshape the problem, and reshape where the responsibility sits for the change. How do we do that on a broad systemic level? That’s very hard, but we can only try.
Power Plays
There was consensus on the importance of systematically addressing the power dynamics and established hierarchies that privilege some social groups and forms of producing knowledge. There was an often-expressed desire to create research environments that shared the power and the benefits of research more equitably, especially with those who are most affected by the content area of the research project. We also shared about instances of lived experience research priorities being dismissed: It is important to recognise that credibility is being given through a system of knowledge that privileges a certain type of ‘objective’ knowledge and creates hierarchies of ways of knowing. As co-researchers facilitating sessions with lived experience participants we try to acknowledge and speak to the understanding that we are operating within structural forces of oppression and discrimination. So, we'll be talking about ageism, sexism, heteronormative behaviours, the gender binary, and patriarchy. Representations of power and oppositions to that, and how those representations of power and oppression have created disadvantage. …being willing to take on someone else’s agenda as long as it’s within the scope of a project. I don’t think a lot of researchers are very willing to do that.
Drawing on human rights, feminist, and community development frameworks for reimaging power distribution we found the following principles were highlighted as central to sharing power: shared decision-making; greater opportunities for lived experience to influence the research agenda, design, and outcomes; valuing academic knowledge and other ways of knowing equally; as well as equal recognition and benefits of contributions to the research and intellectual property: In The Positively Women Project, we valued lived experience of HIV as much as technical expertise. Women living with HIV were involved in a number of different ‘co-researcher’ roles, including chief investigators, community advisory board members, artists, and co-researchers and co-authors on study outputs. They contributed to all phases on the project, from setting research priorities and securing funding to study co-design, ethics submission, recruitment of artists/participants, data collection, data analysis/interpretation, and knowledge translation including design of the online exhibition, tours of the exhibition with audiences, and contribution to peer-reviewed conference presentations and publications.
The use of language to create exclusivity was raised by some in our discussions and was seen to act as a barrier to lived experience co-researchers’ participation. Ensuring language is simple and clear helps mitigate potential othering of people without an academic education and reinforcing power imbalances: I think it’s (academic language) just another way of othering. Another way of creating in and out groups, and if that’s what you want to do, maybe working with lived experience is not for you.
‘Who’ and ‘what’ is being included were further points of discussion. Who decides what is most relevant to include, and what has meaning in the data, are often overlooked as a key stage of power and influence in research that can be enhanced through lived experience co-researchers being active in research right through to knowledge translation: ...when it comes to the meaning, making the analysis, that’s when it all gets too hard. And we take the information away, and we make sense of it without them.
Recommended Actions to Support Co-Research
Actions to Support Co-Research With People With Lived Experience by Theme.
Discussion
This paper presents seven key themes that have been identified through a process of critical reflective discussion. In collaborating on this paper, our ways of working in our reflective discussions and collaboration in analysis and writing up reflected many of the themes that emerged from our discussions. Firstly, we involved a diversity of lived experience co-researchers who were at different stages of their co-research journey and who worked in different fields of research. Secondly, we were flexible in how people participated in the reflection process for this paper. Thirdly, to rebalance power, we had an equal number of researchers with lived experience working alongside researchers based in universities. Finally, we collaborated at all stages of this work, learning by doing and valuing different forms of knowledge in what we agreed to include, how we analysed our recorded discussion data and wrote up this paper. This paper provides important learnings and actions pertaining to co-researchers with lived experience.
The importance of ethics as process and also situated ethics has been highlighted previously in qualitative research (Cutcliffe & Ramcharan, 2002; Piper & Simons, 2005). A recent critical review identified potential ethical conflicts that need to be considered in qualitative research such as participant autonomy, power asymmetry, lack of role clarity, and requirements of ethics committees that are not feasible (Taquette & Borges da Matta Souza, 2022). Although this other literature focuses on the ethics for participants, their work provided some clear considerations for ethics committees that are also useful in ensuring ethical practice for, and with lived experience co-researchers. For example, developing and maintaining trust throughout the process, which is reflected in many of the themes we identified from our discussions, such as creating safety for all, and positioning and power. However, ethics as process remains largely outside the realm of institutional ethics committees in health and medicine who remain focussed on regulatory compliance (Allen, 2018). In reviewing co-research proposals these ethics committees should ask different questions of co-research projects that relate more to process, and how power and agency are shared. Ethics committees are often only focused on participants and not the safety of co-researchers and other research staff and do not address the complexities that can arise in co-research (Thomas-Hughes, 2018).
An ethical and equitable approach necessitates inclusion of a diversity of voices. However, as other studies have advocated (Holetzek & Holmberg, 2022; Learmonth et al., 2009; Martin, 2008; Nathan et al., 2006), our reflections highlighted that teams need to be aware of the challenges of representation. One, or even a few, lived experience co-researchers can never represent the full spectrum of views for any population group or group of people with lived experience and university and health service researchers need to spend time to recruit co-researchers. They also need to be cognizant and clear in their communications about the limitations of what the involved lived experience co-researchers provide in terms of ‘speaking for’ a whole community (Gupta et al., 2023). The concept of representation has been a thorny one in the literature with people with lived experience involved in health service decision-making often facing challenges to their legitimacy (Holetzek & Holmberg, 2022; Learmonth et al., 2009; Martin, 2008; Nathan et al., 2006). Working with lived experience co-researchers who have established networks or are supported by research teams and funding to reach out to or establish networks, requires attention so they can bring their own unique experience, and also include and represent the views of the wider affected communities (Dahm et al., 2019; Nathan, 2004).
Our reflections around the theme of ensuring safe ways of working are also highlighted in some of the published literature. Importantly recognising the potential for institutions and established research processes, especially those from a biomedical tradition to inadvertently replicate processes of removing agency, marginalisation or exercising power over populations groups (Råheim et al., 2016). The discussion of vulnerability for people who are participants has relevance for working with lived experience co-researchers, and it is helpful to view vulnerability not as an inherent weakness and instead value how working with vulnerability can complement the research process (Råheim et al., 2016; Sterie et al., 2023). In deciding what safety means for lived experience research it is important the people involved are afforded the opportunity to define this for themselves.
Our experiences in researching with lived experience co-researchers and our experience in working together in developing and writing this paper affirm the necessity of having flexible mechanisms for participation that enable different people to engage in ways that are most accessible and comfortable for them. In practice this means more than one mechanism for engagement may be needed in the one research project. Alongside efforts to build capacity, individuals may seek different ways to contribute over time as their skills and confidence grows. The broader literature identifies a range of methods for participation (Wiles et al., 2022), but there is little attention to the need for flexibility and multiple means of engagement within the one research project.
Traditional research methodologies require a skillset that is most often learned, or recognised as being learned, through years of study and usually includes completing higher research degrees. Lived experience co-researchers do not usually come through those traditional channels to research (Råheim et al., 2016) and training and capacity building often needs to occur as part of a research project. For confidence to be built, and the full and equal participation of lived experience co-researchers to be realised, then investment in removing some of the mystery of research methodology and building research skills is required (Lamb et al., 2020, 2023). A key learning from our shared experiences was that while training courses, such as how to do qualitative interviews, were valuable it was more often the work side by side with lived experience co-researchers that built confidence including in making meaning from the data collected where too often academic perspectives dominate (Karnieli-Miller et al., 2009; Nathan et al., 2023). Conversely, those trained in traditional ways of research to create new knowledge can benefit from understanding other ways of knowing and gain a deeper understanding of lived experience perspectives.
Co-researchers with lived experience are often external to universities, though we also discussed when those working in universities also have lived experience and the challenges this can raise (Baidawi et al., 2023). Regardless of affiliation, co-researchers with lived experience should be able to come from a strengths-based perspective which challenges a long standing and dominant deficit discourse in health and medical research, which has been expertly critiqued by Aboriginal and Torres Strait Islander scholars (Fogarty et al., 2018). Fogarty et al. provide an outline for approaches that are “‘strengths-based’, which seek to move away from the traditional problem-based paradigm and offer a different language and set of solutions to overcoming an issue” (p. vi). This work can inform efforts in lived experience research more broadly to challenge and reframe the discourse, including the positioning of lived experience co-researchers.
Sharing power at all stages of research with lived experience co-researchers from inception through to publication requires a significant departure from the traditional research paradigm in quantitative research and can also challenge qualitative research approaches where the university-based researcher can still be seen as “the ultimate source of authority” (p. 279) (Karnieli-Miller et al., 2009). Co-researcher roles should signal an equal partnership (Karnieli-Miller et al., 2009), but this is only possible when what counts as knowledge values lived experience alongside scholarship (Gupta et al., 2023), when language is not used as a form of power and where sharing power in decision-making from beginning to end is a fundamental goal. Future research on institutional and individual readiness to work effectively with lived experience co-researchers would be valuable for understanding the systems changes required. Lastly, while knowledge translation has been a feature of the co-research projects of many of the authors it was not a key theme in our discussions for this paper. Future papers and guides could focus on this important aspect of co-researching with lived experience given the value of co-research approaches in ensuring the impact of research on policy and practice.
Strengths and Limitations
We recognise that our research is context bound and may not capture the experience of other researchers working in different contexts with different populations and from different positions. However, our overarching themes are likely to have resonance and be transferable as conceptual ideas. While based on the eight authors experiences of co-research, we sought to include a diversity of research topics across health research and where the practice of co-research is well established as well as where it is still relatively novel. Further research could benefit from including co-researchers from different disciplines outside health and those without a University qualification. As a group of researchers, we come from diverse backgrounds, have a range of ages, and experience in research. Although the findings cannot necessarily be generalised to other countries and disciplinary contexts, the breadth of perspectives included in our reflective discussions allowed for robust discussion of the challenges and benefits in lived experience co-research. We were able to identify similarities from across our different experiences in multiple projects and therefore the findings may have broader application.
Conclusion
Working alongside co-researchers with lived experience in qualitative health research can contribute to tangible benefits for the outputs of research increasing the likelihood that they will reflect the needs, strengths and aspirations of those with lived experience. This relies on the process of research itself redistributing power, and dismantling institutional norms that seek to privilege scholarly ways of knowing at the expense of the experience of those who benefit materially from research. Reflections on diverse experiences in co-research are distilled in this paper into core themes focussed on key learnings about ensuring meaningful participation in co-research and ways to foster sharing of power. A framework with a set of questions to support reflecting on the process of co-researching around these themes is provided alongside recommendations for action to embed equitable practices of co-researching more widely across academia and in health services research.
Footnotes
Acknowledgments
We would like to acknowledge First Nations Australians as the traditional custodians of the land on which we meet and work and whose ways of knowing, being and doing inform the research approaches we take. We would also like to acknowledge what we have learned from all those with lived experience who have contributed to the research we have undertaken.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
