The View From the Other Side of the Table: Being a Patient or Relative Involved in Health Research. An Institutional Ethnographic Approach

Abstract

Participatory research practices are increasingly being initiated between patients, caregivers, and researchers in traditional health research. We focus on the integration of Patient and Public Involvement and Engagement (PPIE) in health research in a setting where PPIE has become a strategic aim and examine institutional structures through the experience of patients and relatives invited into PPIE activities. Despite the increasing emphasis on PPIE to enhance research quality and healthcare outcomes in Denmark and internationally, our findings show that PPIE is currently located on the fringes of the research process. Consequently, researchers who are constrained by existing institutional structures and processes decide how to make use of patients’ and relatives’ input. Patients and relatives often feel valued for their unique perspectives in certain parts of the research process, and being part of research gives them unique insights into the healthcare institution. However, the strong institutional context and translocal relations end up shaping their input rather than their input actually shaping research. Through institutional ethnographic methods and the coproduction of the study with patients and relatives, we highlight the complex interplay and negotiation of roles between institutional demands and the personal experiences of being a patient or relative in a research collaboration. By understanding the experience of patients and relatives invited into PPIE activities and how those experiences are influenced, the study shows the importance of how PPIE is implemented within current research institutions by attending to the people who are incorporating it into their praxis as well as to the institution context. The insights gained from this study prompt a reconsideration of roles and legitimate contribution, if PPIE is to truly make a difference in research collaborations.

Introduction

Interest in patient and public involvement and engagement (PPIE) in health research has been increasing for many years. Participatory practices have roots in activist movements, anti-colonial resistance, distrust of societal institutions, and social injustice with the goal of rectifying unjust and oppressive governance and ensuring equal democratic participation (Gélineau et al., 2023). Traditional health research has accepted this general participatory turn by increasingly and concurrently incorporating various collaborative practices into traditional research methods, resulting in overlapping concepts and interpretations (Nguyen et al., 2020). PPIE has, in traditional health research, been found to improve research implementation, research quality, and to improve treatments and healthcare organization (Brett et al., 2014; Manafò et al., 2018; Shen et al., 2017). In fact, it is seen as a permanent solution through adding resources (including labour resources and increased self-management) to the mounting challenges many health systems are experiencing (Ansell & Torfing, 2021; World Health Organization, 2012, 2024). The established benefits and impacts in traditional health research are mostly oriented towards research improvement, omitting benefits for, and potential negative experiences of, the individuals who participate in PPIE activities (Russell et al., 2020).

Critical views have recently been published by patients, highlighting a complex practice describing how they felt ignored, belittled, and that information was withheld from them during research collaborations (Richards et al., 2023). Another patient writes that the legitimacy of PPIE efforts as part of a governance or funder agenda may be challenged for being defined, implemented, and managed by institutions, and not by patients (Johannesen, 2018). Both articles provide insight into what it can be like to be a patient involved or engaged. The institutional factors are largely ignored in many publications (Paylor & McKevitt, 2019). Many studies address elements such as power imbalances (Abelson et al., 2022), but do not address the causes sufficiently. In a previous article on institutional influences on researchers’ experiences, we found that many tasks researchers performed were tied to institutional demands, heavily influencing PPIE collaborations (Karlsson et al., 2024). Others highlight that a lack of clarity in methods and consideration of the historic origins has resulted in a complex range of activities rarely monitored or evaluated sufficiently (Madden & Speed, 2017). While many European countries are turning towards patient involvement in broad healthcare management, local cultural and political contexts are important to understand (Dent & Pahor, 2015). A scoping review in the Nordic countries found that reporting of PPIE practices - and thus PPIE activities - in scientific articles has occurred more frequently in recent years, aligning with trends in the Anglo-Saxon countries, which have been the international first movers (Dengsø et al., 2023). In Denmark, where this study took place, involving patients in health research is gaining attention (Finderup et al., 2022; Skovlund et al., 2024), but so far, it is neither well-described nor integrated (Christiansen et al., 2023). User involvement in the development of the healthcare system has been introduced as a political agenda as a way to ensure that citizens experience an open and democratic system (Karlsson et al., 2024). More recently, Danish health policy documents have mentioned involvement as an intrinsic value in the development of the healthcare system (Ministeriet for Sundhed og Forebyggelse (Danish Ministry of Health and Prevention), 2014), and a Danish Knowledge Center for User Involvement (ViBIS) has been established (Danske Regioner, 2014). Three out of five administrative regional authorities managing the secondary healthcare sector now mention PPIE in their health research strategies (ViBIS, 2022), marking it as a focus for the future. Odense University Hospital (OUH) is one such regional hospital with the first goal in its current research strategy being:

Research for and with patients and relatives. Our ambition is to actively involve patients and relatives in all parts of the research process […] As research often aims to improve the conditions for patients, it is important that patients and relatives can influence the research process (Region of Southern Denmark et al., 2021, p. 6).

This strategy was created after inspiration from a study trip to the UK and a conference at the Danish parliament, after which ViBIS was established. OUH management started involving patient representatives in their central research council and a few years later included it as a goal in their research strategy, as shown above (information provided by OUH administrative staff). The PPIE collaborations we investigate occur in a Danish healthcare system, accessible without charge for all citizens with a social security number and generally perceived as an equalizing factor in society. The state plays a strong part in societal organization and consults actively with civil society organizations (Biddle et al., 2021). Others have found that the Danish welfare system should be favorable for participatory approaches due to a strong voluntary tradition and a general trust from citizens that the political- and health care systems will look after them. This also means accepting that everyone must contribute to the upkeep of that system (Lund & Nilsen, 2021; Svendsen et al., 2012; Vrangbaek, 2015). With the methodological approach of institutional ethnography, this article investigates how people in a healthcare institution manage new work required when PPIE becomes a strategic goal. Institutional ethnography works with problematics, which are “a territory to be discovered, not a question to be answered” (Smith, 2005b, p. 41). When something is implemented as a management strategy or policy, and not by those who perform the everyday tasks (as is the Danish case), it is imperative to understand the people who must perform those tasks and what they will do to make them make sense, as well as to look beyond that and explore the social constructs at play (Smith & Griffith, 2022). Our problematic investigates how institutional research structures influence the experiences of patients and relatives involved in PPIE activities. Understanding how participatory activities are experienced from the patient’s or relative’s standpoint is key to learning how PPIE currently fits into contemporary research cultures within health research institutions. This insight can help us, as a collaborative research community, progress towards embedding PPIE as a meaningful activity and to determine if adjusting existing research structures is necessary to include new ways of working.

Objectives

This article aims to add knowledge to the ongoing discussion of the impact and use of PPIE as a progressive and increasingly popular health policy strategy. Following the implementation of a hospital research strategy with the stated ambition of involving patients in all parts of the research process, we aimed to explore and understand how existing institutional structures influence patients’ and relatives’ experiences of being invited into these newly established practices. We also aimed to understand what social constructs are at play and how societal institutions either hamper or promote collaborations between health researchers and the public.

Methods

The method of inquiry of institutional ethnography (IE) can, through its aim of granting epistemic privilege to those whose voices are located both outside and inside the institution, give us insight into institutional discourse and relations (Smith, 2005a, 2006; Smith & Griffith, 2022). IE focuses on how people’s lives are organized socially and tied into institutional processes (Murray, 2022). It always takes the standpoint of people and begins by exploring their experiences and praxis (Smith & Griffith, 2022). The goal is to understand and make visible the way people participate in ruling relations and to show the resulting coordination of people’s activities (Cupit et al., 2021). Ruling relations are translocal (meaning they cross several locations within the institution): they coordinate and organize local activities but originate elsewhere via discourses and texts (Smith & Griffith, 2022). IE emphasizes the use of texts in analysis, as they are imperative in mapping and understanding how activities are coordinated: they control activities and make institutional knowledge travel across the institution. By conveying information from one institutional location to another, they are the link between what people do in their everyday work and the ruling relations of the institution that organize their work (Smith, 2005d). Different forms of knowledge coexist within an institution: experiential knowledge, which is localized to a particular situation, and institutional knowledge, which travels across the institution which may be ideological in character (Smith, 2005d). By making the institutional aspects the focus of investigation, we can highlight not only people’s immediate experience, but also how their experience relates to the larger ruling relations within a historical and theoretical understanding of society (Widerberg, 2021).

IE is a vast approach, and for this article, we have focused on the concepts that were most at play in our data, namely work, which in IE terms is defined as: ”what people do intentionally (this does not mean that they want to do it) that takes effort and time and is done under definite conditions” (Smith & Griffith, 2022, p. 41). People who are ill try to manage or deal with their illness, which requires them to navigate the healthcare system. In Smith’s understanding, patients work when managing their disease and navigating their appointments with the health system: they accumulate work knowledge from these activities, and they often unconsciously interpret and adjust their actions to obtain social recognition within an acceptable framework guided by the institutional discourse (Smith, 2005d). The same applies to researchers (who are most often clinicians as well), who also learn what work is expected and beneficial within a health research institution (Karlsson et al., 2024). People know what words to use and how to act to be heard and accepted; this is labelled intentional institutional captures, which show how the institution shapes people’s intentions and actions (Eastwood, 2006; Smith, 2005d). In order to be part of the institutional dialogue, a person’s resources of discourse, language, and intentions enable participation but also make certain actions unacceptable within the institutional frame of knowledge. These elements of work and institutional captures are presented in the analysis as the overarching elements of institutional processes coming into view in people’s experiences.

Data and Data Collection

The research team consisted of five researchers and five patients and relatives (research partners); all were part of designing the study, gathering and analyzing data, and writing this article. All adhere to the COPE International Standards for editors and authors. All data collection took place at OUH between March 2022 and April 2023. OUH is a mid-sized university hospital covering many research disciplines and areas. Ten purposefully selected cases were included in our study. A case was either an active research project with PPIE in one or more activities, or a research board, which commonly oversees or funds multiple research projects. No inventory of ongoing research projects or research boards existed at OUH, so the cases (Cases A-K) were selected systematically by the principal investigator (PI) and research partners through a snowball approach: known researchers were asked to share knowledge of their own and other relevant PPIE activities. They thus became the gatekeepers, who allowed us access to the field. We had framed an ambition to include different types of PPIE fora (for example advisory boards, committees and individual research projects), as well as variation within selected cases, such as stages of the research cycle, ontological grounding, levels of experience of PPIE. Each case was selected as we developed our understanding of the field (Rankin, 2017) (see Table 1 for an overview). Typically, a PPIE activity between researchers and patients and/or relatives occurred in the following manner: researchers invited patients and relatives to come to the hospital to discuss aspects of one or more research projects and sent written information and a meeting agenda prior to the meeting. At the meeting, discussions could include which research projects to fund, what outcomes were relevant, or whether the layperson’s summary was understandable. Six out of the ten cases included ended up having activities with patients and relatives during the data collection period and thus serve as data for this article (the remaining cases are presented in Karlsson et al., 2024).

Table 1.

Overview of Included Cases

	Cases			Interviewee prior experience in projects	Interviewee prior experience on boards	No prior experiences of PPIE	Documents included in analysis
	Project	Board	Meeting characteristics
Relative C1		Qualitative	Meeting 1:			x	Agendas
			4 researchers/8 patients/relatives
			Meeting 2:
			3 researchers/9 patients/relatives
Patient D1		Quantitative	Meeting 1:			x	Invitations, agendas, online group forum, news letters.
			3 researchers/12 patients/relatives
			Meeting 2:
			1 researcher/2 patients
Patient E1		Mixed	15 researchers/3 patients/relatives	x	x		Agendas, terms of reference, preparatory documents.
Patient E2				x	x
Patient E3					x
Patient G1	Quantitative		Meeting 1: 20 researchers/3 patients.	x			Agendas, protocol, project documents.
Patient G2			Meeting 2: 2 researchers/3 patients.	x
Patient I1	Qualitative		Meeting 1: Workshop-based: 8 health care professionals/2 patients/relatives.			x	Invitation.
Relative I2			Meeting 2: 5 patients/relatives.			x
Relative K1	Qualitative		Workshop-based		x		Invitation.
Patient K2	Qualitative		4 researchers, 10 patients/relatives	x	x		Agenda, research strategy.

Note. Projects are defined here as one individual research project with PPIE activities. Boards oversee multiple projects. Qualitative/Quantitative/Mixed relates to the overall research methodology used within a case. Cases without direct patient involvement (Cases A, B, F, and H) are not part of this analysis as only researchers participated, and results from these can be found in Karlsson et al. (2024).

Data Collection

With the acceptance of all those involved in a selected case, the PI and a research partner observed meetings in which patients/relatives and researchers collaborated on research related tasks while taking field notes. During observations, informal chats with people attending the meetings often took place, which we also noted. Afterwards, meeting attendees were approached and asked to be interviewed. Some interviewees revealed during interviews that they were also involved in other projects. When this occurred, the PI and research partner asked about those experiences as well, which the interviewees naturally used in comparison with their present experience. Those experiences are part of the interviewees’ work knowledge, and we therefore regarded it as crucial to include them, even though those experiences were not related to the cases at hand. In total, 11 interviews, 10 observations, and connected documents (selected when mentioned by the interviewee or used during observations) make up the empirical data for this article. The full data set thus consisted of field notes from observations, transcribed interviews, and texts in the form of emails, contracts, protocols, research strategies, and meeting agendas.

Process of analysis: As IE does not prescribe strictly defined analytical steps or data collection methods (DeVault & McCoy, 2006), we approached analysis by reading interview transcripts, observational field notes, and documents several times, first to seek the primary dialogue (what people said and what was written in the case documents), and then the secondary dialogue (prior experiences, conversations and translocal knowledge) (Smith, 2005c). This helped us identify experiences and their organization into individual yet translocal experiences. We mapped this organization by connecting it to translocal documents and field notes (Turner, 2006), while looking for traces of the institutional discourse and emerging institutional captures (Eastwood, 2006). Certain words, trains of thought, or values were present in both texts and dialogue and these served as entry in understanding the translocal. It was a circular process in which revisiting each step became necessary once each new social organization, work process, and work knowledge appeared, which can be described as a ‘jigsaw puzzle that grows piece by piece in its own direction’ (Smith, 2005e, p. 159). For example, a patient described the process of answering an invitation to join a research council as writing a job application, having a serious interview, and being selected. This led us to look at the terms of reference the council had developed for the role. This showed that the patient representative was expected to behave in a certain way, spend a certain number of hours and work without payment. This information is one piece of the jigsaw puzzle of how PPIE is operating in the institution, connecting us to the OUH research strategy and to a managerial decision document stating that payment was not relevant for PPIE activities at OUH.

Results

First, we present our work with the data by focusing on the work patients/relatives recounted doing during interviews. The data show both their experience and hints at translocal aspects. We then describe the institutional organization visible in interviews and observations, but which may not be visible to the individual (Widerberg, 2015). What emerges from this perspective is that PPIE is generally brief, highly varied, and located at the fringes of the research process, with a constant negotiation of legitimacy at the table and of space to operate within the institutional frame.

Being Invited

Some respond to a notice at the hospital or an ad on social media, some are invited through patients’ associations, and some are handpicked from the clinic to join boards and projects. One board (Case E) held interviews for the position of patient representative and had terms of reference stating that active participation in board work is voluntary and expected to include contributing ideas and constructive suggestions to future research. The patient ‘hired’ felt selected to join something exclusive:

I was so proud. I think it was funny that those five professors were sitting there – they had really brought out the big guns. I had no idea what I was getting into. But I must also say that to sit there and say something at the table where professors sit and judge... You must have courage… So, the procedure of being recruited – because it was a recruitment procedure – it matches the work (P2 Case E).

For the other boards and individual projects, patients did not experience being selected; if they expressed interest in the subject, they were invited to participate.

Interviewees expressed that their participation contributed aspects “the researcher cannot see” (P1 Case I) and explained that some knowledge can only be obtained by living the experience. They see their role as bringing a patient’s or relative’s perspective. For some, it is not a problem to know the researchers from clinical treatments: “We are all professional – or should be… Yes, you have to know your role on the day” (P2 Case G), but others felt it would be too personal. This also shows that a certain way of behaving is needed to fit the role of the day.

The Meetings

At the first meeting, they were often not sure what the project was about or how and when the researchers would like their input, but they trusted the researchers to know where the input would be used best. Therefore, joining PPIE activities meant accepting the plan presented by researchers, except in interviews K1 and C1, where interviewees expressed that they would only accept collaboration on their own terms. Generally, they experienced uncertainty about the next steps in the project, and when they then did not hear from the researchers for a while, some wondered if they were still involved.

Some had noticed the setting of the meetings as an important factor in their ultimate level of engagement; all observed meetings were held in the hospital, and some patients/relatives immediately felt uncomfortable and insecure because of their prior experiences and relationships with staff there. “If any golden nuggets were to come out of that dreary meeting room, it was because they really had to come out” (P1 Case K). We observed a form of passivity in meetings where interviewees answered what they were asked but often did not initiate conversation. When asked during interviews, some explained that when material had been sent prior to meetings, they saw their role as being more important during preparation; they would read, comment, or rate potential projects, but not necessarily join the debate at the meeting itself:

I was at the big joint meeting [with other researchers in the project]. Many technical terms were flying around, and a statistician gave a presentation that was difficult for me to understand. It is still rewarding to be part of the effort. Yes, because you feel that you are included even though you do not necessarily have much to contribute to this forum. You should also feel confident saying some things without feeling that they are stupid. So, you must feel secure enough to ask some questions or express your opinion (P1 Case G).

The general experience was a feeling of being treated as an equal. Most interviewees (7 out of 11) had previously worked or were currently working in some role within the health system, and they felt that this helped them understand the processes and terminology:

Perhaps there could have been some more like us. But it felt like an equal collaboration. It may also have something to do with whether you speak the language they like to speak among themselves. Others who are not in those circles may have difficulty understanding it (P2 Case I).

Thus, even though not all forums are experienced as good places to speak up, they are still experienced as desirable, because they create a feeling of being included and kept in the loop. When the collaboration takes place in a smaller forum with welcoming researchers, it helps make patients/relatives comfortable with sharing their experiences. When more than one patient/relative were present, they explained that they could work and ‘rally’ within the case, to feel they stood stronger, showing a united perception of the patients’ perspective.

“We have typically received material beforehand that we have looked at. I think it's good that I know the other patient and that she has the same knowledge about things. It's very good that we can agree before we stand up and say: We think things should be this way. (P1 Case G).

All expressed that they were quick to pick up whether they were being put into boxes by the researchers or whether they were genuinely being treated as individuals: “Here, they don’t put us into boxes like ‘this type of patient’ because, they are not used to speaking to us” (P1 Case I referring to working with a unit without patient contact). When thinking back on their experiences as patients/relatives in the hospital, many shared a feeling of being treated as something other than a person. “When you are part of the factory, you may forget that we are people who lie in the beds” (P1 case I). They hoped that being part of research could help turn this around and make the research focus on what mattered to patients. They felt that they were there as patients/relatives, but as some did not receive treatment anymore, or were patients only now and then (and therefore did not identify as patients), it could be difficult to pinpoint their role. Thus, their experiences as patients/relatives justify their presence at the meetings, but the role itself is hard to define. Several were also healthcare professionals but tried not to use that knowledge, because they were invited as patients/relatives, while at the same time we saw that it helped them understand what was going on and contribute on a level that the researchers accepted.

The Work

Interviewees were asked to do a variety of activities such as commenting on funding applications, prioritizing research projects, giving input on study design, being part of a design workshop, and commenting on laypersons summaries, and one project listed them as co-authors on research articles. Some of the tasks, like commenting on articles were experienced as acknowledgement, but it was difficult to provide more than “co-read and then stand on the author list” (P2 Case G). Information (such as project protocols, meeting agendas, and task descriptions), as well as general communication, occurred in all cases via email. Sometimes this amounted to many emails going back and forth in the larger research group, with the patients/relatives confused as to which ones required their response. It felt frustrating when shared documents could not be opened on their private computer. In these cases, no solution was provided by the researchers, and thus, they could not give input. As a result, in several instances the common way of working was not adjusted to accommodate the new members outside the institution. At one research board, interviewees were unable to find enough information in the lay summaries provided and became curious about the mechanisms of the project: “I want to understand it” (P3 Case E). Therefore, being able to give input required considerable time reading the full application, although this was not described as expected in the terms of reference. To the interviewee it was necessary to understand the estimated results for the end user and indications of usability, in other words, they used their work knowledge to contribute beyond what was expected.

The interviewees who had been contributing for several years saw that researchers “are just humans too, they are not immune to good argumentation” (P1 Case E), and it made them more confident in holding their ground when debating. They gained courage when they experienced that what they said was being referred to by the researchers. Displaying good argumentation also made researchers invite them to join different projects, and that made them feel proud. They became more comfortable with the research process and with what good research looks like.

“Those of us sitting around the table have changed, we've become tougher. It’s the same as how a professor reads... I'm convinced they start by reading the lay summary, just as I do. And if they don't understand that, then they don't move on. So, we're in the same boat” (P1 Case E).

At boards where the work is similar from meeting to meeting, patients explain first spending vast amounts of time preparing, looking up unfamiliar words, etc. After a while the work becomes familiar: “I remember in the beginning, I was much more lenient. Now, I’m not googling abbreviations” (P1 Case E). Thus, patients learn how to act and how to be taken seriously at the meeting table. They rally, prepare and argue their case, learn the language required, and demand more from the collaboration.

No patients were paid for their time. They received reimbursements for transportation, but many who lived within the city declined. They were offered refreshments at meetings, and in one case a goodie bag (showing their presence was valued). Most wanted their contribution to be voluntary: “If something good will come from this, it’s fine by me. And as it’s voluntary, no one is telling me: You have to read this! No, that’s up to me. That freedom is there; I can quit at any time. I’m only doing this for myself” (P1 Case I).

They explained that with payment comes responsibility and expectations; without payment they can come and go as they please. They are not participating for the money, but for the benefit they derive for themselves and future patients. A few with experience from several projects and boards felt differently. They felt that the considerable amount of time they spent on the work warranted payment, just as the other members of the board were paid for their work:

“In other countries they pay… It’s about equality. And then they can say what they want: I sat in this meeting, and this professor was talking about altruism. I could have hit him. I wonder if he is altruistic when he negotiates his salary? And I’m not talking about huge salaries, I’m talking about feeling treated like an equal” (P1 Case E).

Joining the Institution and Getting (Un)comfortable

In this section, we move our gaze from individual experiences and analyse how those experiences are hooked into the larger institutional organization.

During observations and interviews, uncertainty was frequently expressed: “I don’t know how to contribute” (P1 Case I), and “this is not the right forum in which to contribute” (P1 Case G).

After collaborating for a while, patients/relatives learn how the institution works by observing what the researchers do; when in doubt about their role within the activity, they try to do the same. They gain work knowledge: knowing when to speak and when not to, they read and comment on the texts sent to them in the same style as researchers do. The patients who prepare on their own initiative for meetings and have research experience are admired by the others: “I am humbled by the research knowledge you have” (one patient to the other during an observation in case D). They experience research and medical knowledge as giving them credibility and acceptance at table. in one case, researchers asked for contributions to patient information sheets and a quality-of-life questionnaire only, showing that lived expertise was expected in those areas but was not considered in others, even when patients/relatives offered input:

“Participant information and quality of life are obvious areas in which patient representatives at the meeting are expected to contribute. Radiographers, statisticians, and other specialists also contribute within their respective areas – so patients have specialist areas where researchers ask for their opinions. One patient offered input on other areas like how to shorten the time before the research results would benefit future patients; it was quickly explained why this could not be done. Several of the researchers turned towards the patient as she spoke and raised their hands to comment” (field note, observation in Case G).

When referring to this dynamic during interviews, the interviewee explained that there was always a risk of sounding stupid when speaking up, and therefore they learned to choose the right forum. When not knowing the participation rules of the institution (spoken language, processes, and specific subject knowledge), there is a risk of feeling out of place or even being overruled and feeling stupid. On the other hand, in the areas where lived experience was considered expertise, their input was taken into consideration. Researchers often plan PPIE activities to fit into their existing research process and to allow for publication (Karlsson et al., 2024). We observed how this planning influenced the means of involvement: meetings held only during office hours, publications and decisions about desired input being planned before the involvement began, and collaborations being discontinued when the desired input was obtained. We saw, and interviewees experienced, that learning how the institution functions and how research processes play out enabled contribution and collaboration with researchers. Patients/relatives saw a gradual change in their idea of what a hospital was. They imagined that staff knew each other and widely exchanged information and knowledge. When they were on the inside, they realized that it was a huge enterprise, a ‘bureaucratic giant’ (P1 Case K) that was extremely hard to turn.

“I thought: now these medical professionals see me and think: “Someone from the outside is joining, and what is he going to do here?”…. But I got a shock learning how big a machine I had gotten into. I think we were 14 at the meeting and not one knew the others. Well, aren't you all just buddies?” (P2 Case E).

Being invited into the institution provided insight into an institutional body of knowledge and organization previously not encountered. This ‘peek behind the scenes’ and what it takes to be accepted there makes the institutional organization and institutional captures of research very visible: It feels exclusive to be invited, you must perform in a certain way to be accepted, and you must work in a certain way to be able to give your input.

One board (Case C) and one project (Case G) had run for years before PPIE was an official OUH strategy. In these cases, the patients explained how the relationship grew stronger over time. They felt rewarded when the researchers gave them feedback about the difference they had made to the project and when the researchers reciprocated their contributions by offering knowledge about the condition or topic, or about the healthcare system. Patients/relatives here experienced a running dialogue between them and the researchers about how they were going to contribute, what the next agenda should be, how the research was progressing, and how to incorporate their suggestions. We observed meetings in these two cases with a higher level of discussion and somewhat open agendas, which created time for debate. One board had members who could be considered marginalized in general society; here the patients/relatives shared that there was more at stake for them in joining. They took information back to their community and hoped it could help their whole community receive better care: “We help to get our voices heard out there. And they must be heard because there are many who need more help and a greater focus on their problems” (P1 Case C). The feeling of being valued was important for this knowledge exchange to occur:

“We can talk with the researchers about how we feel and that is very important. But it’s not just the time they spend, they must also listen and hear what we say. Many do not really listen, and then I shut up. Then, I don’t want to tell my story” (P2 Case C).

Experiencing a meeting forum, where the researchers wanted to understand their challenges and focused on reciprocating in the form of information and support, it felt worthwhile to be there and share their story. This information could be shared in the community and thereby help others too. The researchers in this case spent considerable time negotiating what the patients/relatives wanted to learn and how to conduct meetings according to their needs. An informal chat with the administrative staff in the case confirmed that there was a mutual agreement to run these meetings differently from what standard research unit policy otherwise dictated, for example by ordering food from outside the institution. In the remaining cases, patients/relatives had to accommodate institutional processes to be there but here, the institution had to accommodate the patients/relatives, who otherwise would not accept being there.

The Institutional Shaping of Lived Experience

OUH does not prescribe how PPIE should be done, but as we saw, it does provide terms of institutionally accountable actions (Smith, 2005d). By having a strategic goal of including the patient’s perspective with no other instruction or explanation, the discourse of PPIE is shifting the perspective from individuals to an undefined category of patients’ perspectives, in which people in reality do not exist (Smith, 2005d). No one experienced being just patients or just relatives but rather being people who had a lived experience, and we saw that they actively used many forms of work knowledge. It took time to learn how to express this knowledge in institutionally acceptable ways. Patients/relatives adopt behaviors for which they are rewarded with positive feedback and callbacks, and they tailor their contributions to what they learn is useful to the institution. Therefore, researchers, patients and relatives carry out the strategic goal of PPIE while remaining bound to institutionally recognized processes, thereby reducing their capacity to perform new activities. As mentioned in the introduction, besides lived experience, another discourse exists in the historic development of participatory practices, in policy agendas, and general societal development where it is seen as a democratic right, a practice of accountability and rectification of earlier injustice (Beresford, 2020). This discourse is not present in this study’s data; on the contrary, researchers decide what knowledge is needed.

Another Danish project found that recruitment processes may favour middle-class patients with values similar to researchers (Stage, 2023), and we discovered during interviews that most interviewees were former healthcare professionals. This helped them navigate the institutional knowledge and thus contribute to research. They were patients who understoond the accepted institutional knowledge, and were considered to have epistemic privilege by other patients (and by researchers). A certain lived experience of working in the health system thus seems beneficial for a successful collaboration when it takes place under existing institutional structures, but it is not the the lived experience of being a patient.

Having PPIE as a goal in a strategy, as a political focus, and in funders’ demands presents an intention for a shift in scientific knowledge production. Yet, for it to actually inform and change policy and practice requires more than a democratic persuasion (Madden & Speed, 2017; Tritter, 2009). Epistemic norms may need adjusting, and our data suggest that such adjustment is not (yet) occurring naturally, even when it is ‘built in’ through the strategic introduction of PPIE activities. The knowledge patients/relatives gain from lived experience does not seem to be considered expert knowledge capable of informing research, which others point out as necessary for creating impact (Liabo et al., 2022). Our study showed epistemic authority of patients in only one case where the researchers bent the rules to accommodate the patients’ requests for meetings and content. In this case, patients did not accept collaboration on the researchers’ terms, which are embodied by institutional rules. Across other cases, patients accepted their capacity as epistemically inferior: not wanting to be paid, letting researchers decide what information to use, and relinquishing attempts to influence research knowledge they tried to obtain. We observed an expectation to contribute their lived experience to certain areas of research only, which again is a legitimization of epistemic potential, but less so a realization of this potential (Papoulias & Callard, 2021). When patients/relatives felt they had more knowledge and a desire to understand other parts of the research process, they made up their own way of preparing, often mimicking what they had learned researchers did to gain credibility. We see this as a step towards epistemic potential being fulfilled: patients/relatives can and want to contribute more than initially invited to, but the institutional logics end up shaping their knowledge and contribution rather than their knowledge shaping the institution on a larger scale. When considering the initial strategic goal that patients’ experiences should influence the research processes (Region of Southern Denmark et al., 2021), our study shows that the current institutional knowledge and work processes limit such influence.

Discussion

Institutional ethnography invites us to see beyond surface-level narratives of inclusion and collaboration and to make visible the institutional work that patients and relatives must engage in to be recognized as knowledgeable. As we have shown, this work includes learning to speak the language of the institution, mimicking researchers’ textual practices, and accepting the segmentation of their input into predefined areas such as patient information and quality of life. Contributions that exceed those boundaries can meet subtle or overt forms of institutional resistance. Thus, patients and relatives engage in epistemic tailoring, that is, modifying their ways of knowing and speaking to align with institutionally sanctioned modes of participation. Others have found that structural barriers, such as inflexible academic time frames (Scholz et al., 2019) and a dominant deliverables logic focusing on requirements and demands from elsewhere, such as funders and ethics committees (Papoulias & Callard, 2021), shape meetings in PPIE collaborations. Papoulias & Callard further argue that dialogue at meetings can create a feeling of patients’ input being considered, but not incorporated, thereby minimizing the effect of PPIE in the project at hand while simultaneously legitimating its epistemic potential. Similarly, we observed that the institutional logic and the researchers’ epistemic position allowed them to use the patients’ input as they found best, and the patients largely accepted this practice: “If they can use me for anything that’s good” (P2 Case K). de Boer (2021) found that a biomedical understanding of a disease enhances patients’ credibility, which is a part of the institutionalization of their experience. The illness experience is subjective (Grim et al., 2022), but it is also formed by the growing work knowledge of the institution and the epistemic hierarchy that the individual gains during clinical treatment and PPIE collaborations. A distanced, more general recount of the experience may be easier to share, and this may be seen as more appropriate behavior at formal meetings (Liabo et al., 2022, 2024).

The research community can learn from researchers and patients who did not start PPIE because they had to, but because they wanted to. These cases in our data were also part of the institution, but the needs of the patients/relatives led researchers to bend institutional processes, for example where and when to hold meetings, as well as meeting content. Knowles et al. (2021) discuss a two-way learning approach, where a focus on reciprocal learning may help move PPIE towards a relational setup, giving the patient a greater chance to be a person with epistemic equality rather than a categorical patient sitting at the table on researchers’ terms.

Those patients/relatives in our data, who had been part of PPIE for a while, considered their contribution to be of value and therefore saw that it could warrant payment. Elsewhere, PPIE guidelines recommend paying patients for their contributions; for example, the UK has set payment rates ranging from £12.5 for a small task to £300 for a full-day meeting (National Institute for Health and Care Research, 2024). Payment can be viewed as compensation for time spent, a step towards equity within a team, as facilitating commitment, and as enabling participation by respecting potential financial vulnerability (Richards et al., 2022). Our informants found it to create expectations of responsibility and did not want to be paid (nor had they been asked). The Danish volunteering tradition and trust in society predate the current focus on participatory governance and health strategies (Lundgaard Andersen & Hygum Espersen, 2017), which may create conditions for commencing PPIE under the institutional complex of the welfare state unique to the Danish context. Thus, here, PPIE may even be seen as less pertinent; the state and the researchers are trusted to make effective treatment solutions for the patients of the future. Patients/relatives consider PPIE interesting and good, but they do not doubt that researchers could do the research without them. This sense of the benevolent and knowledgeable state may differ from contexts elsewhere where PPIE at least partially grew out of a demand for involvement from the public due to distrust towards authorities.

Strengths, Limitations, and Future Perspectives

The study was created and conducted by a team of patients, relatives, and researchers over a period of three years. As the IE approach informs the researcher to look out for their own institutional captures (Smith, 2005d), our team had multiple kinds of knowledge, which enabled analysis of the data from different perspectives and experiences.

We have analyzed and described experiences of our interviewees separately from experiences of interviewed researchers, which are published in Karlsson et al. (2024). A combined analysis could provide further insight into how one project might be experienced differently by both parties. We chose this division because we believed the rich data generated necessitated a detailed description of experiences; however, we recommend reading both articles.

Most patients in our cases were former healthcare professionals. This shows a limited representation, and our results may not be applicable to other groups in society that are not yet involved. A future focus should prioritize diverse inclusion in Danish PPIE. The study was conducted in a specific setting where collaborative practices are new, and we may rightly question whether the findings are context-specific. IE’s focus on the translocal counteracts this, and one aim of the article is to explore what manifests locally yet is structured and institutionalized from elsewhere. Patient representatives in Richards et al. (2023) shared similar experiences from different settings, and we invite future research into institutional influences on PPIE elsewhere to better understand the connection between accepted research structures and epistemic positions in PPIE.

Conclusion

By starting from the standpoint of patients and relatives, this study has traced how their participation in PPIE is shaped by institutional logics. While PPIE activities were often described as meaningful, patients and relatives learned to align their contributions in institutionally recognized ways. This alignment required acquiring institutional work knowledge, letting researchers decide how to use their input, and adopting behaviors that ensured credibility. With PPIE as a strategic goal, the institution shows a will to include experiential knowledge in knowledge production, but existing epistemic hierarchies and research processes constrain its influence. Through institutional ethnography, this study highlights how experiential knowledge is organized and, at times, limited by the very structures that invite it.