Reflections on Collaborations With Patient Partners in Neuro-Oncology Healthcare Research: Sharing Personal Experiences and Ethical Issues

Abstract

There is growing interest in collaborations between patients and researchers in health (care) research. However, there is a disparity between the anticipated positive impact and the frequent well-intentioned but complex realities of collaborative health (care) research. In this paper, we reflect on ethical issues as described by the first author in her autoethnographic research diary notes while working with patient partners in her PhD project on existential treatment in neuro-oncology patients. We report how she, and we, as a multidisciplinary team, approached and addressed those ethical quandaries. The patient partners in this PhD project are either individuals with a primary malignant brain tumour (glioma) or their spouse. We selected three case descriptions, from the autoethnographic research diary notes of the first author, in which we describe ethical issues related to: (1) confrontation with negative health status updates of patient partners, (2) influence (deterioration) of cognitive functioning on collaboration in research, and (3) responding to issues that reach beyond research activities. The reflections on the three case descriptions offer insights into building meaningful partnerships with patient partners diagnosed with a brain tumour and how we can align these in our efforts to work towards (epistemic) justice. Reflections on ethical issues within collaborative health (care) research can contribute to meaningful, ethical and epistemically just partnerships with patient partners. We expect that similar ethical issues may arise in research involving patient partner groups with similar characteristics, such as people with a progressive disease and/or cognitive deficits. We encourage researchers to integrate reflections in their collaborative work because reflective practices help in navigating ethical issues.

Introduction

There is a continued momentum towards collaborations between patients and researchers in health (care) research (Lang et al., 2022), to the extent that an increasing number of research funders endorse or require patient collaboration (Wilkinson et al., 2024). The importance of collaborative health (care) research has been acknowledged by the World Medical Association in the 2024 revision of the Declaration of Helsinki (Bibbins-Domingo et al., 2024) as well as the World Health Organization (Boivin et al., 2022). A rights-based approach or rationale for collaborating with patients in health (care) research is a well-known argument, cited by various researchers (Brady et al., 2023; Browne & Dorris, 2022; Russell et al., 2020; Schilling & Gerhardus, 2024). Collaborative health (care) research has shown to add value and to have (procedural) benefits, such as more effective, efficient, and sustainable research (Halvorsrud et al., 2021; Modigh et al., 2021; Pedersen et al., 2022). In addition, we value that collaborative health (care) research contributes to a different form of expertise (from lay partners) to the research process; this does not just bring more information to bear on a research problem, it can also be premised on some form of democratic commitment: the expertise of public contributors brings epistemic diversity to the research process (Brady et al., 2023; Browne & Dorris, 2022; Russell et al., 2020; Schilling & Gerhardus, 2024). With regard to the term collaborative health (care) research, several terms are used to describe working or collaborating with patients in the development and conduct of health research, e.g., patient and public involvement/engagement (PPIE), participatory research, co-design and co-production (Locock & Boaz, 2019). In this paper, we have chosen to use the term “collaborative health (care) research”.

There is a discrepancy between the anticipated positive impact and the often good intentions of those embarking in collaborative health (care) research and the messiness, unpredictability, and relational complexities encountered when putting it into practice (Thomas-Hughes, 2018). In everyday practice of collaborative health (care) research, ethical issues may arise, related to, among others, tokenism (being invited as a patient partner, but not having any influence), power differentials, a lack of (financial) support, practical or logistical problems, and insufficient recognition of the vulnerable position of patient partners, as reported by patient partners and researchers (Groot & Abma, 2022; Martineau et al., 2020; Richards et al., 2023). Traditional bioethics principles and research ethics procedures, manuals and predefined lists of barriers and facilitators often provide insufficient guidance to respond to the ethical issues that may arise in collaborative health (care) research (Groot & Abma, 2022; Thomas-Hughes, 2018).

Different studies acknowledge the importance of reflective practices in dealing with ethical issues related to collaborative processes with patients (Finlay, 2002; Fraser et al., 2022; Groot et al., 2022; Harris et al., 2023; Mansfield, 2016; Minna et al., 2024; Richards et al., 2023). There are researchers who suggest that “ethics work” in daily research practice is necessary (Groot & Abma, 2022). The concept ethics work refers to the effort that is required from a researcher to understand an ethical issue and to deliberate the appropriate response in the specific situation at hand (Banks, 2016). The ethics work framework of Groot and Abma (2022) can be used as a heuristic guide to reflect on ethics in collaborative health (care) research. This guide can provide insights into how to attend to daily ethical issues in a responsible manner. They distinguish seven types of ethics work: framing work, role work, emotion work, identity work, reason work, relationship work and performance work.

In this paper, we have made an attempt to do ethics work (Banks, 2016). The first author, a PhD student, conducts a study on existential treatment in neuro-oncology patients. She does research alongside several patients with a brain tumour or their spouses of the neuro-oncology department of the University Medical Center Utrecht. They are involved as patient partners in all stages of the research project (design, data collection, analyses, research meetings, dissemination). The first author made notes about interactions and collaborations with patient partners throughout her PhD project. This paper is based on these autoethnographic data focused on ethical issues that emerged whilst collaborating patient partners. We reflect on these ethical issues as encountered by the first author and describe how she, and by extension we as a research team, dealt with and acted upon the ethical quandaries encountered. In working with patient partners, we constantly strive for the right way of working that does justice to their knowledge and ‘being’. In this way, we try to avoid epistemic injustice, which refers to “wrong done to someone specifically in their capacity as a knower” (Fricker, 2007, p. 1). The knowledge gained in lived experience has been discussed within the context of epistemic injustice, a term philosopher Miranda Fricker introduced to explain how some people’s testimonies are given too little (or too much credibility) by others. This happens either due to discrediting their testimony or due to a gap in our collective hermeneutical framework (Fricker, 2003).

Within the PhD project of the first author, the patient partners are either someone diagnosed with a primary malignant brain tumour (glioma) or their spouse. Within the group of patients suffering from a glioma there is much diversity in survival and (neurological) symptoms (Derks et al., 2019). Gliomas are graded from 1 to 4, and patients suffering from a glioma often have a shortened lifespan (Louis et al., 2021). For example, patients with the most frequent type of brain tumour, a glioblastoma (grade 4), have a median overall survival of 14.6 months after medical therapy (Colamaria et al., 2023; Reardon et al., 2011). The median overall survival for patients with low-grade gliomas is around 10–15 years (Cancer Genome Atlas Research Network, 2015; Eckel-Passow et al., 2015). Medical therapies, which aim to increase life expectancy and maintain quality of life, can consist of surgical resection, chemotherapy, radiation therapy, immunotherapy and experimental therapies (Bush et al., 2017). As a result of the tumour, or the treatment, patients may suffer from cognitive deficits such as impairments in memory, attention, language, visuospatial functioning, psychomotor speed and executive functions (Acevedo-Vergara et al., 2022; van Kessel et al., 2017). To the best of our knowledge, no previous work has reported on ethical issues related to research partnerships with patients in the particular setting of neuro-oncology. This is important because the collaboration with patient partners who have a brain tumour can be influenced by (sudden) progression of the disease and experienced cognitive deficits. Within this paper, we reflect on and write about the backstage processes of an ongoing collaborative health (care) research project. By reflecting on ethical issues that arise, we strive to find appropriate ways to respond. The objectives of this paper are to describe (a) ethical issues that can occur in collaborative health (care) research and (b) reflections on how can be responded to these ethical issues. We aim to provide insights to others who embark in collaborative health (care) research within neuro-oncology and related settings.

Methods

Terminology Patient Partner

We use the term patient partners to refer to our colleagues who live with a brain tumour or their spouse, and who have chosen to be actively involved as research partners in this project. Their contributions are rooted in illness experiences, experiences with (in) the healthcare system and (medical and other) knowledge obtained about their condition. By using the term patient partner within this paper and within our research project, we do not intend to reduce individuals to their medical diagnoses.

Research Team

All the authors identify themselves as female and are early- (n = 1), mid- (n = 2) and late- (n = 2) career academic researchers. The first author (AdS) is a second-year PhD student with four years of experience in the field of neuropsychology. She has a background as a healthcare professional (neuropsychologist) but does not have a therapeutic relationship with the patient partners who are involved in the research project. As part of her studies, AdS conducts ethnographic work at the neuro-oncology department and has frequent contact moments with the healthcare professionals at this department. TS is a professor and focuses on collaborating in care for and with patients with a neuro-oncological disease. She has over twenty years of experience as a neurologist and neuro-oncologist. AJ, professor in patient and public involvement, has a background in psychology and anthropology and over 20 years of experience working with patients in research and more recently in health education. CR is an associate professor and clinical neuropsychologist. She has over twenty years of experience in neuropsychological care, and almost twenty years of experience in academic teaching and scientific research, focusing on neuropsychological topics. MZ is an assistant professor who works for more than six years within the field of bioethics and health humanities. Her research activities, academic teaching and committee work focus on ethical issues in healthcare and medical research.

Four patients and one spouse of a patient with a brain tumour are involved as patient partners in the PhD project that is under study in this paper. The patient partners are all diagnosed with a primary malignant brain tumour (glioma) and are currently, or were, under treatment (surgery, chemotherapy, radiation). This paper discusses case descriptions of three different patient partners. One patient partner has a background in academic research (PhD), all others have a background outside the academic or healthcare field.

Collaboration with Patient Partners

Early in the project, AdS approached patients with a brain tumour to join as patient partners in the research process. Patient partners have joined at different times ranging from 6-8 months after the start of the PhD project. To find patient partners, AdS contacted patients who were part of an advisory group of neuro-oncology patients and attended a presentation of her research project. There was also a patient who contacted AdS independently after a congress and a patient who contacted his physician TS to express his interest in becoming a patient partner.

During the first contact between AdS and patient partners, there was time to get to know each other, provide information about the research project and to explain the involvement matrix (Smits et al., 2020). Smits et al. (2020) designed the matrix to facilitate the conversation about a potential partnership between patient partners and researchers. In a collaboration, patient partners can take up different roles, including listener, co-thinker, advisor, partner and decision maker at different phases of the research process (Smits et al., 2020). The matrix is designed to facilitate the discussion around expectations, needs and wishes regarding the role of patient partner in a research project. We used the matrix to discuss these expectations and to choose which role(s) fit(s) best for the patient partner. The meetings and conversations with the patient partners are every few weeks or months, and take place in the hospital, at a location that is close to the patient partner, by phone and/or e-mail. In this way, the meetings are customized to suit each individual.

Notes and Reflections

Throughout the participatory work of the PhD project, AdS made notes about the meetings and discussions with patient partners. These notes have been used to describe the ethical issues in this paper. The process of taking notes evolved organically. The first author encountered multiple ethical quandaries in collaborating with patient partners she wanted to discuss with the other authors of this paper. In response to this, her supervisor advised her to write about these situations. In supervisory sessions, she shared her reflections and general updates regarding the work with patient partners. In addition to the team-meetings, AdS consulted each of the team members separately to gain specific insights and knowledge. AdS and TS discussed medical related questions, about neurological and cognitive functioning of patients. CR and AdS had meetings about cognitive functioning and impact on changes in health status of patient partners. AdS and AJ debated and reflected on purposeful selected cases, and situations and issues related to possible overburdening patient colleagues given the medical condition. MZ and AdS had conversations to clarify the ethical issues that AdS encountered and together they explored (suggestions in) literature on conducting collaborative health (care) research in an ethical way. After verbally sharing the reflections with the team, AdS implemented the insights and knowledge that she discussed with the authors.

This study is based on these autoethnographic data focused on ethical issues that emerged whilst collaborating with patient partners. The reflections presented in this paper are solely the work of the researchers by profession on the team. This means, that the case descriptions were not discussed with the patient partner at the time of note taking by the first author, or when the first author consulted with her different supervisors about the cases.

For the purpose of this paper, we selected three case descriptions to illustrate ethical issues related to: (1) confrontation with negative health status updates of patient partners, (2) influence (deterioration) of cognitive functioning on collaboration in research, and (3) responding to issues that reach beyond research activities. The case descriptions are described as experienced by the first author. The patient partners concerned have read the case descriptions and they were invited to alter, remove or add information. The patient partners all agreed with the case descriptions and did not make any adjustments. All patient partners have given their permission to publish these anonymous descriptions. Up to now, we have not identified any obstacles regarding informed consent in collaborating with patient partners in this PhD project. There have not been any doubts regarding the decision-making capacity of the patient partners. If there would have been any doubts about this, it would have been discussed within the research team. Since people with brain tumours may develop cognitive impairments, it is important to be vigilant about ongoing informed consent.

Results

Case Description 1: What if You Are Confronted with Negative Health Status Updates of Patient Partners?

As part of one of the studies in my PhD trajectory, I observe conversations of healthcare professionals during multidisciplinary consultations at the neuro- oncology department. During these consultations, the team of healthcare professionals view brain scans of patients and possible treatment options for patients with brain tumours are being discussed. One of these mornings, I suddenly heard the name of a patient partner. At that moment, I was startled, because I had not seen his name on the list. It almost felt ‘disrespectful’ to take notes, because the health status of someone I knew was being discussed. I stopped writing and started listening to the conversation of the team.

His name came up more often during consultations in the following weeks and I continued to experience a sense of discomfort and sympathized with him. In the meantime, the patient partner and I were emailing back and forth about a manuscript. His emails were as enthusiastic as ever and contained good and critical feedback for our manuscript. We had agreed to see each other again a few weeks later. Just before the appointment, I received an email from him saying he suffered from speech loss and that it overwhelmed him at the time. He wrote in his email how sad he was to cancel our appointment. I felt incredibly sorry for him and it struck me how fast his cognitive functioning had deteriorated. He wrote in his email that he wanted to meet soon, so we rescheduled our meeting. It was painfully obvious to see that his speech was different than before, he was clearly struggling to pronounce words. I took plenty of time to have the conversation with him and helped him here and there to find the right words. I was touched by his situation and noticed that I was not able to fully concentrate for the rest of the day.

A month later, I received an email from him that he had to undergo brain surgery. To discuss minor details of the manuscript we agreed to meet a few days before surgery right after one of his appointments at the hospital. His physique had changed in the past few weeks: he had been taking medication that had made his face bulge and he could barely pronounce words. I tried to keep our conversation as short as possible as I did not want to overburden him. At the end of the meeting, I put my hand on his shoulder and wished him strength with his surgery. Within the following days, I submitted the manuscript. Four days after his surgery, he sent an email to support me after he read a message from the journal that had rejected our manuscript. I was touched by his message and gesture, so soon after his surgery.

Reflections of the Authors

The essence of this case description is that working with patient partners who have an unpredictable and unstable health status may affect you as a person and it may be difficult to cope with this. Patients can send positive or negative health status updates after their follow-up appointment at the hospital. Yet, it is also possible to receive health status updates before the patient partner heard it, for example during my observations of multidisciplinary conversations. While working together, I experience a growing relationship with my patient partners. I feel a genuine connection with them and sympathize with their situations. Their negative health status updates therefore touch me. In case of patient partners with an incurable disease, it may even occur that they pass away during the research project, which would be comparable to me with the loss of a colleague. In response to this challenge, we decided to arrange ‘intervision moments’ focusing on how the negative health status updates of patient partners affect me and how to cope with this. Two supervisors are experienced healthcare professionals and know about the impact of negative health status updates.

Another element about this case description that struck us, was our surprise and protective reactions in response to the patient partner’s empathic e-mail and his insistence to contribute to the research so soon after their surgery. We had mixed feelings of appreciation and discomfort that the patient partner was comforting me in the aftermath of a brain surgery. Can we expect a patient partner to (continue to) contribute to research activities whilst dealing with serious health issues? Do we need to guard boundaries, or do we need to respect that patient partners choose to continue to work for the research project? It made us reflect on our position as researchers and the partnership discussed and agreed with our patient partners. Should we act from a duty of care or are we being paternalistic if we would guard boundaries? How do we make sure that we remain true to the preconceived value hat patients have autonomy, and that we should therefore respect their own choice? Openly discussing and reflecting on these feelings and reactions helped us to try and do the thing that felt right.

Case Description 2: What if (Deterioration of) Cognitive Functioning Complicates the Collaboration?

A patient approached me after hearing about my PhD project. He wrote me that he was enthusiastic and would like to contribute as a patient partner. I was pleased to hear this and found it extraordinary that patients are willing to contribute to our research project during their disease trajectory. At our first meeting, he told me passionately about his work and personal life. I found it pleasant to get to know him better. However, I also noticed that it was difficult for me to structure the conversation.

During the following meetings, I felt that it had not gotten easier to structure the conversation. He mentioned that he had difficulty with his language, because of the location of his brain tumour. I did notice this. As a neuropsychologist, I have some experience with working with patients who have cognitive dysfunction, therefore I was extra vigilant about cognitive functioning. After the conversation I wondered: how should I structure our next conversations in the best way possible? How do I make sure this is a meaningful collaboration and contribution to the research considering the language deficits of my patient partner? Should I approach this collaboration in an alternative way? Or should I end this collaboration?

In the next meeting, the patient partner and I reflected on the collaboration so far. The patient partner explained that he had difficulty with his – as he described- “thinking route and language” but that he nevertheless would love to contribute to the PhD project. I felt that it was important to find a suitable way for him to contribute to the research project. I told him that I was still open to a collaboration and that we should find a way that works best for him. At the same time, I mentioned that I am bound by research obligations and deadlines. We agreed together that written communication works best for him and that I should ask him pointed questions. The next email that I received from him contained clear and important feedback. I felt glad that we were able to find a way which works for us now.

Reflections of the Authors

The essence of this case description is that changes and deterioration in cognitive functioning can have an impact on the collaboration between the researcher and the patient partner. Patients who are diagnosed with a brain tumour can have a variety of cognitive dysfunction or decline. In this case, as a result of such cognitive impairment, it was difficult for me to structure the conversation. An important sidenote to case illustration 2 is that the meetings with patient partners are to a certain extent informal and spontaneous and these informal conversations add to our collaboration and bonding. This should not be confused with deterioration in cognitive functioning.

In response to this challenge, I gathered information from the team. From neuropsychological perspective, I asked for advice regarding his cognitive functioning. Was I the only one who noticed cognitive deterioration or was this already known? Moreover, we had conversations to find a way to do justice to the patient partner as a knower and prevent epistemic injustice by wrongfully ending the partnership. The concept of epistemic justice was a guide in our partnership practices: creating space for individuals to participate to create ‘knowledge’ together, without setting limits on how this happens (Fricker, 2007). We wanted to avoid epistemic injustice and discussed how to adjust the meetings. What might be alternative ways of collaboration and knowledge contribution? Are we as researchers morally obliged to continuously look for and experiment with alternative ways of interacting when cognitive impairment of patient partners complicates our collaboration?

Furthermore, we discussed the following questions: What to do if you find that meetings with patient partners no longer contribute to your study? When is the collaboration meaningful, is there actual knowledge co-creation, and should you “end” a collaboration with a patient partner when this is not (longer) the case? Is there more to a patient-researcher partnership than knowledge production (relevant to the research at hand)? Is there even a best way to unilaterally end a collaboration with a patient partner in situations where there is no benefit to the research or epistemic practices? After reflecting on the way of collaborating with the patient partner, we found out that written communication worked best for him. The collaboration could still be valuable, as this written communication provided information that contributed to the research project. It is important to adjust the collaboration for each individual patient partner.

In addition to the first case description, in which the changed health status really touched me, this second case description is an example of how changed health status (in this case deterioration of cognitive functioning) can also result in questions about how to create or continue a meaningful collaboration. We discussed that it is therefore crucial to consider for yourself whether the interactions are contributing to the research project and to ask patient partners whether this way of working suits them. Moreover, when you notice that impaired cognitive functioning is affecting the cooperation, it is important to ask yourself as a researcher whether there are alternative ways to continue the collaboration and experiment with methods that allow for both (patient partner and researcher) to proceed.

Case Description 3: To Give Advice or Not to Give Advice: Responding to Issues that Reach Beyond Research Activities

In my PhD project, a spouse of a patient is included as patient partner. Her husband is diagnosed with a glioma. She is present at the consultations with the healthcare professionals and shares her experiences with me as part of the studies. I find her experiences and perspectives incredibly useful because it keeps me aware of how the situation is being experienced from the perspective of a relative and how I can incorporate this perspective in my research.

During a meeting, the patient partner shared her concerns about her husband and his decline in his current neurological functioning by giving examples of situations in daily life. She had not shared this information with the healthcare professionals and indicated that it would be pleasant to have a separate appointment with one of the healthcare professionals. She wanted to share information about him, but not in his presence because she did not want to hurt his feelings. I found this type of information relevant for my ethnography but I also felt that it appealed to my role as a healthcare professional. However, I am researcher and I am not part of the treatment team. I thought to myself: I do know this information now, but I do not know the patient personally so I cannot properly assess the situation. I noticed that I was feeling some discomfort. I also experienced a sense of responsibility towards the patient partner and decided to advise her to contact the treatment team to share her concerns. I wondered whether I could give her this type of advice in my role as a researcher and if yes, to what extent such advice is part of my responsibility in my role as research- colleague to my patient partners. After the conversation, I felt the urge to check with my supervisor if I did the right thing and whether there was more that I should or could do.

Reflections of the Authors

The essence of this case description is that working with patient partners provides meaningful insights for the research project but some issues put forward by patient partners may reach beyond your role as a researcher. On the one hand in this case, I have built a connection with the patient partner and I feel responsible when she provides information that does not necessarily relate to my role as a researcher, but to my role as a healthcare professional. On the other hand, the question may arise whether I should feel responsible as I do not have a therapeutic relationship with the husband of my patient partner.

In the beginning of our collaboration, I have defined my role as a researcher towards the patient partner and the topic of the PhD project is known to her. Nevertheless, I discussed with the other authors that I might be viewed by her as ‘someone’ from the neuro-oncology department who might have connections with healthcare professionals and solutions to medical issues. When patient partners view you as part of the team of healthcare professionals, a tendency towards (also) putting forward medical issues in conversations is understandable. The question at hand is when you should emphasize your role as a researcher. Where is the line between being research colleagues and becoming someone’s healthcare professional or ‘support person’? Together with the other authors, I considered it important to emphasize towards the patient partner that I am here as a researcher and cannot act in the role of a healthcare professional.

Furthermore, I talked about my reflections with a supervisor who is a healthcare professional, as she knows the relevance of these medical information and question. I wanted to check if I had done the right thing. The supervisor confirmed that it was indeed correct for me to not answer the question from my role as a healthcare professional. It was the right action to refer to the contact person of the treatment team, as the patient partner provided information that could be of relevance for the current health status (and thus to her husband’s treatment).

Discussion

During the PhD project, the first author collaborates with several patient partners who are diagnosed with a brain tumour or their spouse. This study is based on autoethnographic data focused on ethical issues that emerged whilst collaborating patient partners. Over time, ethical issues came up in these partnerships and reflections about those situations were written down. These reflections led to the following case descriptions: (1) confrontation with negative health status updates of patient partners, (2) influence (deterioration) of cognitive functioning on collaboration in research, and (3) responding to issues that reach beyond research activities.

Usefulness of Reflections in Collaborative health (care) Research: Approximating Epistemic Justice

The three case descriptions provided insights into ethical issues in research partnerships concerning how to collaborate with patient partners who are diagnosed with a brain tumour and how to tailor these collaborations in our endeavours to do (epistemic) justice to the people with whom we do our research. As the case descriptions showed, collaborations with patient partners are useful and meaningful but also complex and messy. Certain things are to be expected in this category of patients (such as cognitive decline) and change in health status. However, not all circumstances were foreseen and predictable at the start of this PhD project. Certain circumstances can only be fully understood through the process of experience. The first author bonds with the patients, and vice versa, in a way that cannot be anticipated. The connection she has with the patient partners feels similar to the ones she has with her colleagues at the hospital. Once you start to bond with them, it can be confrontational to hear updates about their health. Since we expected certain circumstances in advance, we planned intervision moments with the first author. This allowed her to reflect on these situations with the team and see in the moment/afterward how to handle this in a good way. Experiencing the ethical issues and dialogical reflections in different team constellations gave us more insight into the complexities of these situations. It was particularly useful to share the encountered ethical issues within a multidisciplinary team. The multiple exchanges, each focusing on different aspects of the ethical issue, allowed for an exploration of the situations from different angles. The study of Groot et al. (2023) confirms that more insights can be gathered within a multidisciplinary team, which can be valuable in search of epistemic justice. Reflections on ethical issues as encountered in collaborative health (care) research can contribute to meaningful, ethical and epistemic collaborations with patients and members of the public. After all, this reflection supports researchers, who may find themselves in a position of power to patients with ongoing serious health issues, to work towards a partnership that does justice to the patient partners’ expertise, experiences and disease knowledge (Groot et al., 2023). This fosters collaborative health (care) research in which patient partners get the role they want to take and are included in the research activities that will ultimately lead to more inclusive healthcare.

Related Fields

The ethical issues we encountered may also apply to patient partners who have similar characteristics, such as people with a progressive disease and/or those who experience cognitive impairment. Previous experiences about collaborations with patients in end-of-life and palliative care (DeCamp et al., 2022) and qualitative research with persons with language and/or cognitive impairments have been described (Groot et al., 2023). DeCamp et al. (2022) mention that authenticity is important in collaboration with patients in end-of-life and palliative care research. They describe authenticity as ‘an engagement activity that is motivated by an honest desire to listen to the voices of patients and caregivers and that includes specific practical actions that make that possible’. According to the authors, authentic engagement requires ‘attention to issues even very near life’s end, recognizing the unique burdens of engagement in end-of-life and palliative care and taking steps to minimize them, promoting diversity, and considering the unique relationships’. Authenticity is also of importance in collaborations with patient partners who have a brain tumour. In this case, authentic engagement requires paying attention to the progression of the disease (and possible end-of-life phase), cognitive impairment and how to respond to this as a researcher. The study of Groot et al. (2023) looked at ethical dilemmas during research projects with older people who have cognitive and/or language impairments. The researchers encountered complex interactions and had to constantly evaluate the appropriateness of their approach. We agree with Groot et al. (2023) that there are multiple ways to gain insight in people’s experiences, besides traditional verbal ways. This aligns with our experiences, in particular case description 2, in which we had to navigate to find a suitable approach with the patient partner with cognitive impairments.

Ethics Framework

Retrospectively, we identified nearly all types of ethics work. We discussed that, for example, being touched by the situations (changes in health status) of patient partners and feeling responsible for not overburdening them can actually be considered as “emotion work” and as virtues of a caring, compassionate and empathic researcher (Groot & Abma, 2022). Moreover, with regard to “emotion work”, communicative spaces were built to foster a meaningful collaboration, which is clearly illustrated in case description 2. Another form of ethics work we identified in our study is “role work”. Role work includes shifting between roles and sometimes taking a position in a situation (Groot & Abma, 2022). As is shown in case description 3, the researcher was aware of her different roles and reflecting on how to approach these when information of the patient partner appealed to her role as a healthcare professional and not directly to her role as a researcher. Further, we did “reason work”, as we individually and collaboratively reflected on the ethical issues that the first author encountered to justify subsequent decisions and actions (Groot & Abma, 2022). Moreover, “identity work” is reflected in all three case descriptions because the first author is trying to maintain a “moral” good professional identity (Groot & Abma, 2022). The first author is also performing “relationship work”, as she actively works on building trust and safety to ensure that all patient partners are seen, heard and valued (Groot & Abma, 2022). Lastly, by writing this paper and presenting our findings at conferences or other occasions, we are making our work visible to others, which is “performance work” (Groot & Abma, 2022). We did find it useful to work with the ethics framework to discuss the ethical issues we encountered. The ethics framework provided recognition and gave clarity on how you work on your collaborations and relations with patient partners. For example, AdS found out that she especially tends to practice emotion work. As a researcher, you can apply these insights into future collaborations with patient partners.

Key Learning Aspects

The three case descriptions were representative of the many notes the first author made in the collaboration. Partnering with individuals who are diagnosed with a brain tumour or similar characteristics is emotionally and relationally challenging. Firstly, it is important to acknowledge these challenges, and the ethical dilemmas this brings. Not all researchers are trained to address these concerns. Striving for meaningful patient collaborations through equal partnership has been an often-debated topic (Brady et al., 2023; Browne & Dorris, 2022; Russell et al., 2020; Schilling & Gerhardus, 2024). Introducing regular intervision moments with people with diverse backgrounds, about the health status of your patient partners, collaborative health (care) research and/or ethics, could make a significant contribution to increase the quality of the collaborative nature of the research. During these intervisions, ethical issues can be discussed and guidance can be obtained from various perspectives. Intervision moments are also supported in the field of healthcare, where professionals share their work experiences and reflections to improve their own practice (Launer, 2019). In an equal partnership one might become and act as research colleagues, yet, not as a healthcare professional, confidant, or emotional support beacon. As is seen in case description 3, the researcher felt an appeal was being made as the patient partner shared details of the treatment and health status of their partner and how this had affected her. The (work)relationship the researcher builds with the patient partner may play a role in this scenario. It is therefore important to set boundaries and clearly define your role as a researcher towards the patient partner. Lastly, we plea for regular evaluation of collaborations with patient partners; the use of the participation matrix of Smits et al. (2020) is a valuable tool to discuss the role of patients. As collaborations may change (e.g. due to changes in health status), the role of the patient partner may shift. As is described in case description 2, the patient partner may still be willing to contribute but through an alternative approach.

Insights and Limitations

This study is, to our knowledge, the first study to describe reflections on ethical issues in collaborating with patient partners who are diagnosed with a brain tumour. In particular, we expect overlap in patient partner groups with similar characteristics, such as people with a progressive disease and/or those who experience cognitive deficits. It is important to highlight that the three case descriptions are unique stories and it is conceivable that other ethical issues may occur when other researchers work together with other patient partners. We are aware of our positionality towards the patient partners. Among others, personality, style of communication, personal background, and years of experience as a researcher may play a role in how ethical issues are experienced and approached. Besides, the frequency of contact between the researcher and the patient partners, as well as the bond they have developed, may play a role in this. The researcher did not identify an association between how she experienced and approached the ethical issues and the role of the patient partner as described by Smits et al. (2020). Also, it did not seem to play a role whether the patient partner was a patient or their spouse.

Furthermore, we acknowledge that finding ways to appropriately respond to ethical issues in collaborating with patient partners is an iterative process and thus ongoing work - we will continue taking notes and discussing ethical issues during intervisions. We recommend other collaborative health (care) researchers to reflect on ethical issues they encounter in practice, as these reflections help in finding ways to appropriately respond to ethical issues, not only in our experience but also in the experience of other researchers (Finlay, 2002; Fraser et al., 2022; Groot et al., 2022; Harris et al., 2023; Mansfield, 2016; Minna et al., 2024; Richards et al., 2023). Writing and discussing the ethical issues have given the first author confidence to do the right thing even during difficult times. She also learned to communicate openly with patient partners. Within this paper, we discussed the ethical issues with the authors. The next step in our ongoing work is to reflect on ethical issues in collaborative health (care) research as a team of partners with mixed epistemic resources, being, patients, relatives, health care professionals and researchers). We also invite them to share their occasions, situations where they felt challenged in the collaboration, whilst also opening up the reflection sessions to discuss both patient and researcher ethical dilemmas within the larger team of researchers and patient partners. Patient partner could bring unique and valuable insights that could enhance our partnership and our learning on the ethical conduct of collaborative health (care) research.

Conclusion

This paper has shown that researchers who conduct research together with patient partners with a brain tumour can encounter situations in which it is not immediately clear how best to act. Autoethnographic data have shown to be a valuable reflexive means to start the discussion with a multidisciplinary team around those ethically challenging situations. In this reflection, attention can be paid to what it entails to build and maintain a meaningful, ethical, and epistemically just partnership. In this paper, we have described insights and key learning aspects of the process of our ongoing collaborative health (care) research project, which may be relevant to other researchers who conduct research with patient partners with a brain tumour or, for example, a progressive disease and/or those who experience cognitive deficits. Reflective evaluation through the discussion of autobiographic accounts of researchers engaged in collaborative health (care) research showed to empower and increase a junior researcher’s confidence. This contribution is important given the growing interest in research collaborations between patients and researchers, while methods to grow skills and confidence in attending to (known) pitfalls concerning ethical epistemically just partnerships are unexplored.