Tight Ties in Collaborative Health Research Puts Research Ethics on Trial? A Discussion on Autonomy,Confidentiality,and Integrity in Qualitative Research

Introduction

Governments, health policy makers, and researchers strive to handle and cope with complex challenges related to how to ensure safe and good quality health care services based on research for service users. Increasingly, collaborative research and coproduction of knowledge seem to be the answer to this type of call to improve health care services (Filipe, Renedo, & Marston, 2017). By engaging researchers, decision makers, health care professionals, and users at different levels in collaboration and negotiation, common health challenges will be addressed (European Commission, 2018; Greenhalgh, Jackson, Shaw, & Janamian, 2016; M. Larkin, Boden, & Newton, 2015; Rycroft-Malone et al., 2016; World Health Organization [WHO], 2012). Collaboration and negotiating is to improve quality, impact, relevance, and manage four bottom lines: productivity, service experience, results, and democracy, by having a bottom-up approach in decision-making processes and structures (WHO, 2012). However, collaborative research will raise new ethical research questions and challenge ethical research guidelines formulated by World Medical Association (2013).

Background

Collaborative research is an umbrella term for methodologies that actively engage universities, communities (including health care workers, next of kin, service users, and policy makers) in the research process from start to end. In health care research, a growing community of collaborative research is taking place, focusing on coproduction of knowledge to ensure research impact (Greenhalgh et al., 2016; Rycroft-Malone et al., 2016). As such, the coproduction of knowledge is said to have the potential to “move beyond the ivory towers” for locally adaptive research collaboration to ensure relevance and research uptake (Greenhalgh et al., 2016, p. 392). In addition, coproduction of knowledge and collaborative research promote openness of research instead of secrecy around the research process (Dubov, 2014). Furthermore, it is claimed that coproduction of knowledge connects to human rights and the user involvement movement based on empowerment and redistribution of power, and accordingly moves beyond token involvement (Filipe et al., 2017).

In contrast, “traditional” descriptive qualitative health care research, with no intention of involving stakeholders beyond being informants in interviews, focus group interviews, and ethnographic studies, follows basic research ethical principles anchored in World Medical Association’s Declaration of Helsinki from 1964 (latest revised in 2013). Furthermore, research ethics committees (RECs) or institutional review boards will ensure that researchers follow the Declaration of Helsinki. Studies should be designed in the safest manner and every health care research project involving human participants should be preceded by careful assessment of predictable risks and burdens in comparison with foreseeable benefits for the ones involved in the research or to others by ensuring the principle of autonomy and self-determination, confidentiality, and integrity (World Medical Association, 2013). Furthermore, it is stated, “The responsibility for the protection of research subjects must always rest with the physician or other health care professionals and never with the research subjects, even though they have given consent” (World Medical Association, 2013). Accordingly, the researchers have the overall responsibility to comply with research ethical principles and guidelines. Furthermore, these research ethical principles are based on a clear distinction between researchers and informants. Despite the Declaration of Helsinki not addressing collaborative research, some ethical guidelines documents, for example, the Canadian Tri-Council Policy Statement on Canadian Institute of Health Research (2014), have mentioned ethical guidelines when doing collaborative qualitative research. Moreover, the Norwegian National Committee for Medical and Health Research Ethics has developed guidelines for qualitative research, although it does not mention collaborative research (Norwegian National Committee for Medical and Health Research Ethics, 2010). Nevertheless, these documents follow the main principles and guidelines stated in the Declaration of Helsinki, which are anchored in biomedical research and, as such, do not address possible challenges or conflicts arising from tight ties in collaborative research.

However, following research ethical principles in line with the Declaration of Helsinki might be challenged by “new trends” in research where empirical material is negotiated and coproduced. When doing collaborative research with communities, policy makers, health care workers, or patients being nonresearchers, the researchers might experience other research ethical challenges than researchers doing “traditional” research on health care workers, policy makers, or patients (Waycott et al., 2015). Accordingly, it has been claimed that RECs are not prepared to evaluate collaborative research when doing research with collaborators (Tamariz et al., 2015). First, it is claimed that there are challenges in relation to informed consent, especially because informed consent is on the individual level, whereas collaborative research takes place on a community level (Flicker, Travers, Guta, McDonald, & Meagher, 2007; Tamariz et al., 2015). Second, it is claimed that the principles of autonomy and guidelines of informed consent are challenged, as a result of participants’ rights to withdraw or not participate when they are offered benefits through a facilitated intervention (Waycott et al., 2015). Third, there might be a problem in relation to maintaining confidentiality and anonymity when researchers and participants are closely involved in the same social community networks (Anderson, 2013). Fourth, it is claimed that there might be challenges related to different participators/stakeholders having different interests (Anderson, 2013; Flicker et al., 2007; Minkler et al., 2002). Community partners tend to defend their community and they might have expectations that researchers produce tangible benefits (Anderson, 2013). Moreover, there may be uncertainties about who holds what rights to the data produced when collaborating (Hoeyer, Dahlager, & Lynöe, 2005). Therefore, there is a concern about the inadequacy of existing ethical regulations in collaborative research in relation to research integrity (Anderson, 2013; Dubov, 2014), for instance, in relation to how research should be free and not be influenced by economic, political, or other interests (Evans, 2012). As such, insider–outsider ties and tensions might cause research ethical challenges in relation to rights to the data produced, its interpretations, and so forth (Hoeyer et al., 2005; Minkler, 2004).

In current research, there seems to be little focus on research ethical issues in collaborative research when working with stakeholders facilitating change. Therefore, the goal of this article is to illuminate and discuss research ethical principles such as autonomy, confidentiality, and integrity of research in relation to collaborative research in health care. This article is based on two cases of collaborative research when executing educational programs performed, respectively, in Norway and Denmark, working closely with two different municipality health care services.

Two Empirical Cases Based on Collaborative Qualitative Research

The two cases are based on two different studies executing two different education interventions in elderly health care services, anchored in a collaborating research design between researchers, facilitators, and coresearchers, and not least municipality health care professionals and managers. Whereas the Norwegian Case 1 is a collaboration between researchers at a research center, facilitators, a leader, and the staff in one nursing home, the Danish Case 2 is a collaboration between researchers at a research center, a municipality, and facilitators executing the Marte Meo education intervention targeting spouses of persons living with dementia. The two cases highlight different research ethical issues and dilemmas in relation to informed consent, confidentiality, integrity of research.

Case 1: Research Ethical Dilemma of Autonomy and Dual Roles

This case study presents a research ethical dilemma in relation to autonomy when obtaining informed consent from facilitators with dual roles as informants and coresearchers when executing a tailored education intervention (Dahl, Dewing, Mekki, Haaland, & Øye, 2018). The facilitators functioned in dual roles as both informants giving their informed consent to participate in focus groups, and as coresearchers producing and analyzing the empirical material being collected by themselves and other researchers in the team. As coresearchers collecting and analyzing the empirical material, the facilitators did not have to give informed consent, but as facilitators participating in the research process, they gave their informed consent to participate as informants in the research project by participating in recorded focus groups exploring the role of facilitation (Mekki et al., 2017). All participants in the project were informed that the facilitators acted as both coresearchers and facilitators. The researchers from the university collected written informed consent to collect data from the facilitators. In addition to collecting informed consent from the facilitators, informed consent was also collected from the nursing home leaders, staff, and residents (Mekki, 2015). The study was approved by an REC (Norwegian Centre for Research Data [NSD], 2012). Furthermore, the case highlights principles of research integrity because the facilitators were caught between their loyalty to the university researchers and to the nursing homes’ staff and their needs.

This case study is based on experiences with a larger education intervention study called “Modelling and Evaluating eviDence based Continuing Education program in Dementia care” (MEDCED), targeting nursing home staff to reduce use of restraint toward persons living with dementia, carried out between 2012 and 2015 in Western Norway (Mekki, 2015; Mekki et al., 2017). The collaborative research project was organized in a hierarchical model with the university researchers at the top, the facilitators also functioning as coresearchers executing the education intervention in the middle, and the nursing home staff as study participants at the bottom receiving the tailored education intervention. The education intervention contained a 2-day seminar, 1-hour monthly coaching session during 6 months, and a 1-day seminar teaching based on local knowledge needs for communication principles when caring for persons living with dementia. The facilitators collaborated with nursing home staff, including the leaders, to tailor the education intervention to the nursing homes’ needs and fluctuations. At the same time, the facilitators collaborated with the university researchers, producing and collecting empirical material (quantitative and qualitative data) to prove the education intervention effective. As such, the facilitators tailored the education intervention to the expressed needs of staff, and in addition, the facilitators made reflective notes based on observations taken while executing the education intervention. The reflective notes were based on a template on what to observe developed in joint cooperation by the facilitators and the university researchers. In addition, the facilitators took reflective notes on their own performance as facilitators, and their performance was coanalyzed by the university researchers. Accordingly, the facilitators functioned in dual roles both as observers of the intervention process by taking reflection notes, and as collaborative partners with the nursing home leader and staff. The facilitators experienced themselves as being in a “squeeze” between being loyal toward the ordinary research group “getting the work done,” and being loyal toward staff in the nursing homes by securing their needs. As such, research integrity was on trial as they performed a dual role as facilitators and coresearchers caught between different expectations and needs. The facilitators felt uneasiness about not being able to perform both tasks in a satisfactory way. That is, neither facilitation nor research tasks were given enough attention.

Case 2: Research Ethical Dilemma of Confidentiality and Research Integrity

This case study presents a twofold research ethical dilemma from a collaborative research project in Denmark. The first research ethical dilemma is about confidentiality in research when there are conflicts of interests between a municipality and researchers from a research center. The case shows that a journalist discovered a mismatch between what was published in two research reports and what was published in a scientific journal (Sørensen, 2015). In the research reports, the name of the municipality was revealed, whereas in the scientific journal, the name of the municipality and all informants were anonymized. The journalist googled the researcher’s name and found a website with a full project report in which the participating municipality’s name was revealed. This disclosure put informants’ confidentiality at stake, because there is only one such project in the whole municipality. The second research ethical dilemma is about research integrity and freedom of research when there is a conflict of interests and collaboration ties are tight.

This project was funded by EU grants and carried out in 2014. The research project included partners from a research center and a Danish municipality executing the education program. The education program was executed by facilitators targeting relatives of people living with dementia. The research center signed cooperation contracts with this particular municipality to conduct research for the purpose of practice development with municipal employees based on shared interests and mutual benefits. However, the regional EU funding was conditional, because the projects’ success was based on predefined pedagogical aims formulated in the EU schemes. The facilitators executed the education intervention by performing two courses targeting relatives of persons diagnosed with dementia, whereas the research team observed the education performance as well as investigated the experiences of the relatives participating in the courses. The research project had an ethnographic design aiming to gain knowledge about issues of people living with a spouse with dementia, as well as to gain knowledge about the theoretical and pedagogical considerations of the facilitators in relation to their teaching and choice of method. The facilitation was anchored in a Marte Meo method (Aarts, 2005), for relatives to handle their next of kin living at home with dementia. The ethnographic investigation consisted of observational participatory studies, focus group interviews, and individual interviews before, during, and 3 months after the two courses were performed. All in all, 29 relatives (13 spouses and 16 adult sons/daughters) participated as informants in the project, and two as participating facilitators. All participants, including the facilitators, gave their written informed consent, except for one participating relative. This person was not observed or interviewed. All participants were also aware that the empirical material would be included in the report naming the municipality, which could possibly put the relative’s confidentiality and privacy at stake due to the middle size of the municipality and few Marte Meo courses. Nevertheless, no names or other marks of identification revealing their identities were recorded when observing or interviewing participating relatives. Moreover, participants were informed that they could withdraw from the study at any time and there would be no consequences in terms of the help they would receive from the municipality.

Research findings were written in two reports and published in the research center’s homepage in spring 2014, and both reports were sent to the municipality. Furthermore, in 2015, a critical research article was published in a peer-reviewed scientific journal (Sørensen, 2015). In the scientific article, the partner appears as an unnamed Danish municipality based on the research ethical principle of confidentiality. After the publications of the reports and the scientific article, a journalist from a private firm selling Marte Meo courses revealed the inconsistency between the reports and the scientific article. In addition, the journalist from this private firm twisted the content of the reports to fit into the private firm’s goals and visions selling Marte Meo courses. For instance, critical findings and phrases drawn from the article and reports were incorrectly rewritten and twisted on this firm’s homepage. The researchers’ and the municipality’s name were revealed with links to the reports, without asking the researchers or municipality staff for permission to do so.

A series of conflict of interests arose in the collaborative project. First, the researchers had expectations that they would produce articles in peer-reviewed research journals in line with methodological and scientific standards. This was at odds with the interests of the municipality, which was not preoccupied with scientific rigor. However, the collaborators at the municipality wanted the researchers to design and plan the project so that it would prove the success of the education program. Therefore, a conflict arose between the researchers and the municipality members when designing and planning the project, despite the researchers telling the collaborators that an ethnographic design could not prove success. Second, the leaders of the research center had an interest in proving the predefined aims set up by EU, which was funding the project, which, in turn, put the researchers under pressure to write up the results in line with these expectations. Third, there were expectations from the collaborative municipality partners to publish research findings accompanied by the logos of all the collaborative organizations and partners in the project, which put the facilitators’ confidentiality at risk.

Discussion

During the last decade, research policy makers have increasingly requested researchers to collaborate with stakeholders in an attempt to overcome the gap between research and practice to ensure good quality in health care services (Filipe et al., 2017; Greenhalgh et al., 2016). This “new” turn in research based on collaboration and negotiation (European Commission, 2018; Rycroft-Malone et al., 2016; WHO, 2012) puts traditional research ethical principles and guidelines based on the Helsinki declaration on trial (World Medical Association, 2013). Although these traditional research ethical guidelines are geared toward biomedical research—often alias clinical trials where patients are solely informants (Oeye, Bjelland, & Skorpen, 2007)—collaborative research is both relational and practical (Braedley, 2018). Therefore, there is a mismatch between research ethical principles based on the understanding of research done on informants, and collaborative research based on research with them (Reason & Bradbury, 2006). In collaborative research, traditional qualitative research roles (researchers–informants) are being mixed up. Informants are increasingly both participating informants and coresearchers, and researchers are increasingly becoming collaborators negotiating the planning, collecting, and interpreting of the research results together with collaborators. These “new” roles create research ethical dilemmas around ethical principles of autonomy (informed consent), confidentiality (ensuring anonymity), and integrity of research. Moreover, RECs do not address these particular ethical issues, which causes tensions and challenges in collaborative qualitative research. Rather, the RECs insist on using research ethical guidelines anchored in the Declaration of Helsinki reflecting biomedical research needs, and, as such, it is inapplicable to qualitative collaborate research.

The Challenge of Autonomy and Dual Facilitation Roles in Collaborative Research

The Norwegian Case 1 shows a research ethical dilemma in relation to following the research ethical principle of autonomy and the guideline of obtaining informed consent. In Case 1, facilitators were acting as both informants taking part in recorded focus group interviews as well as coresearchers taking notes and collaborating in the total analytical process. The coresearchers were unsure on their status as informants and/or as researchers, because the study had been given ethical approval by the national ethical board and they had given their informed consent for participating in focus group interviews (Mekki et al., 2017). Collaboration in research is a form of research that involves and includes participants in large parts of the research process and, as such, does research with people (Reason & Bradbury, 2006). Collaborative research blurs the differences between different participants; who are the researchers and who are the participants? Therefore, the research ethical principle on autonomy and voluntary participation lying behind the ethical guideline of informed consent for persons engaged as informants in research (Cook & Inglis, 2012; Hoeyer & Hogle, 2014; Oeye et al., 2007; Øye, Sørensen & Glasdam, 2015) can create research ethical dilemmas around autonomy and voluntary participation (Flicker et al., 2007; Tamariz et al., 2015). First, the principles of autonomy were challenged when participants were tightly tied to the university researchers, and they were expected to execute both roles. The facilitators in both cases were in practice, not given the opportunity to withdraw from the role of facilitator, and were both executers of an education intervention as well as employees in the municipalities and participants in the research project (e.g., Waycott et al., 2015). Therefore, having dual roles as facilitators and research participants could undermine and blur the principle of autonomy and voluntary participation ensured by the research ethical guideline of informed consent.

Second, engaging in dual roles as both facilitators/coresearchers and informants created problems on how and when to collect informed consent. In collaborative research, participants are often not informants in the traditional sense, but rather participants in research as coresearchers. Therefore, the facilitators were neither fully informants nor fully researchers, and the roles of participants were neither “traditional informants” nor fully engaged researchers (Reason & Bradbury, 2006). Rather, facilitators in Case 1 were participants “in between” doing the education intervention, while also collecting data when executing the education intervention. As such, dual roles as both facilitators and coresearchers were somewhat blurred, making the process around collecting informed consent uncertain. How and when should the university researchers ask for informed consent, when we all are researchers engaging in different ways in the research process? Collecting informed consent from one group (facilitators/coresearchers) and not from another group (the researchers) underscores the hierarchy of a traditional research project and undermines principles of collaborative research coproducing knowledge on equal terms (Mekki, 2015). Therefore, the research ethical guidelines of informed consent in the Declaration of Helsinki consolidate “traditional” hierarchical research positions where educated researchers have a given responsibility to protect informants across the whole research process (World Medical Association, 2013). In contrast, in ideal collaborative research, researchers often have an intention of “moving beyond the ivory towers” (Greenhalgh et al., 2016, p. 392), to negotiate with their participants the research roles and the process of informed consent (e.g., The Canadian Tri-Council Policy Statement on Canadian Institute of Health Research, 2014). Nevertheless, in many instances, inexperienced researchers find themselves in situations where they have to handle and juggle different, often dual, roles. Therefore, RECs, universities, and other research institutions have a responsibility to guide less experienced researchers experiencing demanding roles and unpredictable research ethical dilemmas in collaborative research. For instance, should RECs and supervisors at research institutions monitor whether dual roles will be disclosed to participants, or advise that dual roles should preferably be avoided when planning and starting out collaborative qualitative research. Nonetheless, unpredictable research ethical dilemmas may occur when collaborating in all phases of the research process. This was the situation in Case 2, where the researchers experienced pressure from research leaders and collaborators to design and plan the project in line with their expectations and aims. Overall, research ethics in collaborative qualitative research must, therefore, be understood as relational, situational, and emerging (Braedley, 2018; P. J. Larkin, Dierckx de Casterlé, & Schotsmans, 2008; Morris, 2015; Øye, Sørensen, & Glasdam, 2015). Accordingly, researchers cannot predict all future ethical dilemmas and issues; unexpected ethical issues often occur when there are interpersonal tight ties in play. Therefore, RECs should be available to guide and supervise researchers experiencing research ethical dilemmas difficult to solve on the spot (Øye, Sørensen & Glasdam, 2015), and not least to prepare researchers for research ethical dilemmas elucidating complexity in roles, expectations, and tight ties. That is, members of RECs could, for instance, ask relevant questions to researchers in relation to partnership ties and overall power relations, complexity of roles including dual roles, differences in expectations, and so forth.

The Challenge of Confidentiality in Collaborative Research

The research ethical guideline of informed consent is not only to ensure informants autonomy and voluntary participation inherent in the informed consent form, but in these forms, researchers usually promise the informants full anonymity. In Case 2, the ethical dilemma was in relation to confidentiality and anonymity, putting researchers in an ethical dilemma in relation to how to present the empirical material without revealing the name of the municipality when the municipality management was interested in being open about the name of the municipality. The only ones to be anonymized were the relatives who participated at the Marte Meo course. Nevertheless, these participants might possibly be traced because the name of the municipality was revealed in the reports, indicating that the principle of anonymity was either not fully understood by the participants or was not as important for these participants. Anonymization might not be as important for user participants because less is at stake for these participants than for employee participants (Oeye et al., 2007). Employee participants, can be put in a “squeeze” between being both informants and being loyal employees in the task of proving the health care projects’ success. Moreover, this “squeeze” can undermine the quality of the research, and the extent to which researchers question informants’ honesty when being informants in qualitative investigations. Lack of ensured confidentiality can lead to less honest informants, as seen from the perspectives of researchers (Anderson, 2013), and thereby to less quality control in the investigation. Accordingly, the research ethical principle of anonymity to protect the informants’ confidentiality and privacy is on trial when collaborators have an interest in being open for the political purpose of proving the success of the education program. Searching for honesty as a research standard and principle might be on trial, when collaborative ties are tight and guidelines of anonymity cannot be ensured for all participants.

Integrity of Research on Trial

Tight ties to collaborators can create a research ethical dilemma of integrity of research, which is especially evident in Case 2. Despite the researchers and municipality collaborators finally coming to an agreement on how to do the research, the researchers felt obliged to follow the wishes of the municipality when writing the research protocol. The researchers at the research center were tied to the municipality, because it gave the researchers “free entrance” to the informants who were participants of the Marte Meo program. Furthermore, the researchers got funding from EU through the collaboration with the municipality, and both collaborative leaders were interested in continuing this collaboration for future funding. As such, the dependency of external funding created economic ties, in conflict with research ethical principles of free and critical research (Anderson, 2013; Dubov, 2014). Moreover, the municipality managers set the agenda and the aim of the project to “prove the evidence” of the educational intervention for politicians and funders, even though the researchers said that an ethnographic design could not prove the success or failure of the Marte Meo program. Accordingly, tight ties to funders may impede the researcher’s autonomy to choose focus in the research, and hamper research integrity, academic freedom, and research standards (Bayer & Sampat, 2016; Florczak, 2015). Hence, collaborative partners can expect that researchers produce tangible benefits (Anderson, 2013), for the purpose of defending their practices as seen in Case 2. Moreover, in Case 2, the researchers wrote the reports, but were obliged and pressured to adjust the writings in line with expectations from the leaders of the research center being influenced by EU funding and predefined aims. Therefore, in collaborative research, the presentation of the research results might end up as less theoretical and less critical “to please” the different voices, whereas in principle, autonomous researchers can have a more “free” role formulating theoretical perspectives and critical discussions in scientific publications. As seen in Case 2, one of the researchers published a critical article in a scientific journal (Sørensen, 2015), based on her interpretation of the results independent of management contribution or interference. However, when the journalist discovered the mismatch between the content of the report and the scientific journal, he ended up questioning the truth and quality of the results; which of the two forms of publications should be trusted? The research ethical principle of scientific integrity is on trial when the written presentation of the research is a result of negotiation and agreement and not on scientific rigor. Research independence is hard to achieve when funding is based on tough competition, and research and municipality leaders can be willing to compromise to please their partners and funders to be attractive for future project collaboration and economic support. Therefore, “free and competitive” funding, which often includes several partners and private companies, does not tend to create “free” qualitative researchers and research. For example, in Denmark, municipalities must prove themselves to be active in research partnership to improve quality in health services (Beck Jørgensen & Vrangbæk, 2013; Pedersen, 2011). Such political guidelines encouraging “triple helix partnership” between public sector, private companies, and research institutions might create tight economic and political ties to collaborators—and, as such, hamper the quality of research and create research ethical dilemmas in relation to research integrity. Accordingly, RECs should not only monitor threats to research integrity but also guide researchers to be aware of and avoid pressure to act responsibly and truthfully in collaborative research. Moreover, RECs should also include members with expertise in qualitative collaborative research to supervise researchers engaging in research partnership.

Research ethical dilemmas around research integrity can also arise when participants have dual roles as both facilitators and coresearchers, as shown in Case 1. It was hard for the facilitators to have focus on both roles: facilitation when executing the education intervention and being coresearchers taking notes. Hence, the facilitators observed and evaluated their own performance at the same time. Being “in-between roles” might have led to a deterioration in the quality of the observations of the facilitating process, because it is hard to both have focus on themselves as part of the facilitation and, at the same time, observe themselves—making this a dilemma known as the observers’ double paradox. That is, facilitators are observed by themselves as facilitators and are the observer of others, such as staff responses to the education intervention. This can affect the quality of the collected research in qualitative research. Bourdieu shows through his studies that humans just cannot figure out their own practice, as there is more at stake than the individual is able to perceive, observe, or reflect on, in the sense that the importance and impact of the structural factors are invisible to humans (Bourdieu, 1990).

Conclusion and Implication for Research Ethics in Collaborative Research

Overall, collaborative research might be rewarding for all partners, securing research relevance and impact, and not least tentatively empowering all stakeholders in democratic processes of coproduction of knowledge. However, research ethical dilemmas arise when collaborative ties are tight. As we have shown, dilemmas arise around ethical principles of autonomy, confidentiality, and integrity of research in the wake of tight collaborative ties. Despite the intention of empowering participants in research by engaging them in the process of research, both as informants and coresearchers, and this creates new forms of power relations. Tight ties between “ordinary researchers” and collaborators can jeopardize the autonomy of all partners and blur the responsibility of the researchers central to the Declaration of Helsinki (World Medical Association, 2013). Furthermore, tight ties in collaborative research can jeopardize the quality of the research results because persons who are not educated as researchers become a central part of the research process including planning, collecting, and analyzing data. Moreover, tight economic and political ties also call into question the integrity of the researchers. Accordingly, there is a need to revisit and resume international research ethical guidelines formulated in the Declaration of Helsinki when it comes to research principles of autonomy, confidentiality, and integrity of research. Based on lessons learned from the two projects presented in this article, we have suggested that collaborators contemplate and negotiate three issues to avoid unnecessary misunderstandings, conflicts, and pressures. Collaborative research projects must pay particular attention to agreements on the following: (a) Informed consent should be replaced by written agreements on the type of situations in which the different participants are informants, and agreements on the kind of situations in which the participants are coresearchers. (b) To ensure the principle of confidentiality, the participants, being facilitators or coresearchers, must discuss and come to an agreement in relation to which kind of participants should be secured confidentiality, to ensure anonymity and quality of data. (c) The research ethical principle of research integrity should be ensured by an agreement on who should be responsible for the different parts of the project based on research and other forms of qualifications. Hence, such agreements should indicate who will be the academic responsible for the different parts of the scientific reports and papers. This will avoid the situation where a research plan, collection of data, and interpretation of research results are provided to order and are a blueprint of what the stakeholders holding the power have decided on beforehand. Overall, such agreements could ensure openness, quality of qualitative research, and not least freedom of research. (4) Last, but not least, a better comprehensive education for independent REC members should be arranged to monitor, guide, and advise less experienced researchers doing collaborative qualitative research with a special attention to ethical principles of autonomy, confidentiality, and integrity of research.