Authorship disputes and patient research participation: collaborating across backgrounds

Abstract

Public participation and survivor research in mental health are widely recognized as vital to the field. At the same time, contributions of patient collaborators can present unique challenges to determining authorship. Using an unresolved dispute around research contributions to the American Psychiatric Association’s Psychiatric Services journal, authorship and contribution are addressed. Recommendations are suggested to prevent dilemmas and achieve responsible research credit inclusion, especially among researchers with different backgrounds and asymmetric power relations. Researchers and publishers can prepare proactively for conflict through consensus on authorship criteria, prior agreements around author inclusion, arrangement for third party dispute resolution, transparency in communication and contracts, notification to prospective publications of pending disputes, a contributor-guarantor model of contribution, journal editor “expressions of concern” when authorship disputes go unresolved, and expectation of conflict as generative.

Public participation, patient-researcher collaboration, and survivor research are all reshaping medical scientific research in the internet era. Public policy initiatives and leading research recommendations, such as the National Institute of Health Research in the UK, the Canadian Institutes of Health Research, and the Patient-Centered Outcomes Research Institute in the US, recognize the value and contribution of collaborative science (Edelman and Barron, 2016; Smith et al., 2019). But when do citizen and patient researchers also constitute authors in the context of scientific publication? Who decides, and what if there is disagreement across backgrounds and areas of expertise? Does the unique contribution of citizen and patient researchers also offer generative potential, to prevent and resolve authorship disputes and support successful research collaboration between participants with different backgrounds in the future?

In the arena of mental health care, traditional relations of patients as receivers of care and objects of research are giving way to active patient and citizen collaboration as co-equals in research settings (Sacristán et al., 2016). The importance of “survivor researchers” and patient involvement has also been understood as addressing the power imbalances and legacy of mistreatment that have characterized much of psychiatry’s history (Russo, 2012). Social movements of patients and family members have advanced the disability rights imperative of “nothing about us without us,” and sought to overcome tendencies of tokenism by recognizing partnership and establishing more equal power relations (Ormerod, 2018).

Professional researchers and their patient collaborators may, however, have diverging understandings of contribution and credit around authorship, and widely different capacities to meet challenges when disputes arise. Equal participation may introduce equal expectations when research moves to the realm of publication, but professional researchers are often unfamiliar with how to address the needs of participants who do not share their backgrounds. While publication represents the height and culmination of the research endeavor, adding to the sum of scientific knowledge and conferring recognition of and credit for work accomplished, the role of survivor and citizen participants in authorship attribution represents new territory, especially vulnerable to misunderstanding and disputes. Patient and survivor researchers may not be motivated by the same institutional and career incentives as their professional counterparts, but authorship confers status and prestige useful in other domains, makes the contributions of social movements transparent, and represents recognition for and valuing of (often volunteer) work done.

Scientific research embodies institutional practices and community standards, and participants without professional experience may find themselves ill-equipped to understand publishing norms (Newman and Jones, 2006; Russo, 2012). Other factors, including junior researcher status, early career efforts, or historically marginalized groups such as disabled participants struggling with accommodation access, may further magnify disadvantages. In this fraught terrain the vulnerabilities and asymmetrical power relations intrinsic to patient and public involvement in research further compound the difficulties presented by authorship disputes (Rasmussen, 2019). At the same time, in an era when scientific publishing faces concerns about both inclusion and research integrity, it is precisely as outsiders sensitized to power differentials that survivor collaborators may reinvigorate discussion of dilemmas otherwise left unaddressed.

The 2017 Psychiatric Services publication, “Discontinuing Psychiatric Medications: A Survey of Long-Term Users,” illustrates these complexities (Ostrow et al., 2017). Publication resulting from this research did not include several patient researchers, who lacked professional research experience, culminating in an unresolved authorship dispute formally unacknowledged by the journal or funding institution. The role of patients and survivors in research remains an important one, and by recognizing and considering the unique dilemmas in this example, even after publication, valuable lessons for this and future collaborations may emerge, where professional researchers step outside familiar milieus to work side-by-side with non-professionals.

The Psychiatric Services paper resulted from a study, the Psychiatric Medication Discontinuation Research Study (PMDR), that was initiated outside research institutions. The research team was made up of professional researchers, people who have been patients, people with direct clinical experience working with patients around the topic, and researchers with patient backgrounds, with several combining some or all of these. The research comprised a survey of patients exploring their experiences and health outcomes around medication withdrawal, an innovative topic seldom addressed in the field but of pressing concern to patients (Hall, 2019).

At its inception the PMDR arose directly from patient initiative and participation. At support and advocacy groups in Western Massachusetts organized by the patient-run group Freedom Center, academic researchers visited or asked to visit. Conversations often turned to the question of who was controlling and initiating the research priorities of these visitors, and who was benefiting from the results. What if patients themselves set the agenda? What would we research? At the same time, some participants expressed skepticism about participating in research, worrying that “being a guinea pig” was a familiar role not easily overcome, even in a collaborative context.

These efforts resulted in a community initiative that brought together more than five institutions, both scientific and non-scientific, to form the PMDR study, including a lead researcher who worked with an unaffiliated private research company and several patient collaborators with no academic affiliation. Professional researchers on this original team went on to publish in Psychiatric Services without inviting other non-professionals, arguing that work professionals did on their own, such as the analysis of data, creation of the literature review, and manuscript drafting and preparation, constituted exclusive authorship criteria. The non-professional researchers claimed that their prior contribution, which included initiating and conceiving the study, participating in study design, and collaboratively drafting topic areas and survey questions, was substantial, and therefore warranted the opportunity for authorship inclusion. Discussion among the published authors and researchers did not lead to a resolution, no third-party mediation was found, and authorship of the published paper was left with a dispute that remains unresolved.

As patients and clinicians, the non-professional researchers brought unique topic expertise not held by others on the team. But they were untrained in publishing norms and unfamiliar with research collaboration, and as a result found themselves at a disadvantage. These patient researchers discovered that authorship disputes are common in academic research: a significant number of academic researchers will become involved in a dispute about the credit, contribution, acknowledgment, and appropriate control of research and resulting publication, with harmful impacts on science (Schroter et al., 2020). The egalitarian ethic of patient advocacy and activism came into contrast with the unfamiliar setting of the science industry, with unfamiliar discussions of professional norms and protocols bringing differences in power and background into sharp relief. Without guideposts, the potential of a promising, innovative collaboration went unrealized.

Criteria for authorship

What constitutes an author therefore became fraught for the research collaboration that led to the Psychiatric Services publication. This was compounded by the broader scientific research context of controversy about authorship in general. As Strange notes, “There is a disturbing and pervasive lack of understanding of what authorship on scientific papers means, of the responsibilities that it conveys, and of how it is determined” (Strange, 2008). And even where authorship is understood, misconduct is not uncommon in scientific research, and a looser application of standards can become an institutional norm. “In this ‘publish or perish’ era when researchers are under pressure to publish frequently and preferably in high-impact journals, violations of authorship criteria are not uncommon” (Šupak-Smolčić et al., 2015).

According to a survey of publications and contributors, only 60% of authors in health research journals satisfy authorship criteria, and authors and editors were not familiar with or disagreed with criteria (Marušić et al., 2011). Disputes can therefore arise simply from lack of understanding or training around authorship criteria, which then become a lightning rod for pre-existing disagreement or conflict. In practice, junior research staff and those who are no longer employed in a unit when a paper is written are most often disadvantaged in assignment of authorship (Digiusto, 1994). This parallels the Psychiatric Services dispute, where professional researchers proceeded to the writing stage without including non-professionals from the team.

The International Committee of Medical Journal Editors (ICMJE) stands as the leading ethical standard for authorship guidelines in the medical research field (Jacobs and Wager, 2005). The ICMJE criteria are substantial contribution to research, drafting or revising the manuscript, final approval, and assuming accountability to resolve integrity questions. All four criteria must be present to qualify for authorship, and meeting the first criteria entitles contributors to invitation to the opportunity to meet the other three (International Committee of Medical Journal Editors, 2019).

Despite this apparent clarity, one study found that less than one-third of scientific authors had actually made “substantial contributions.” Authors were often included on a gift or honorary basis despite not meeting authorship criteria, and authors frequently claimed inclusion on unwarranted basis such as being the department head or managing study resources (Leash, 1997). A survey found evidence that 21% of articles published in major medical journals in 2008 violate ICMJE authorship criteria (Wislar et al., 2011). University of California San Francisco conducted a 1992 study where 38% of respondents reported they had been listed as an author on a paper for which another author did not deserve authorship (Eastwood et al., 1996). Nearly a third said they would agree to claim an undeserving author as author to advance their own career or prospects for publication. And willingness to claim an undeserving author nearly doubled for those who said they had previous unethical experiences with authorship inclusion, indicating the troubling emergence of systematic and normative disregard for accepted criteria for ethical publication (Leash, 1997).

In the Psychiatric Services case, non-professional contributors agreed they had not met the full ICMJE criteria for authorship, which include drafting work, approval of the final manuscript, and taking responsibility for the published work. Instead, the dispute rested on the claim that their prior substantial contributions warranted invitation to the possibility to meet these other criteria, and that these professionals on the team had therefore unfairly disqualified them. They cited the ICMJE, which notes,“. . .all individuals who meet the first criterion [substantial research contribution] should have the opportunity to participate in the review, drafting, and final approval of the manuscript” (International Committee of Medical Journal Editors, 2019).

The Committee on Publication Ethics (COPE), formed to protect the integrity of the scholarly record across disciplines, describes such disqualification as a common scenario, as when a junior researcher makes substantial contributions but then their supervisor writes up the work and doesn’t include them as an author: “The junior researcher would not qualify as an author according to the ICMJE criteria because he/she had no involvement in the writing of the paper nor final approval of the version to be published. However, the junior researcher may have had no opportunity to do so. He/she should have been offered this opportunity and at least included in the acknowledgment section if the opportunity was declined” (Committee on Publication Ethics, 2018).

Denial of opportunity to participate in authorship became central to the Psychiatric Services dispute. Non-professionals claimed timing of changes to the research team was not relevant because substantial contributions had already been made, while the published authors claimed the others forfeited their invitation to be authors because of work done, including manuscript preparation, after they left. The published authors noted that Psychiatric Services is not a formal ICMJE member and requires no explicit provision around invitation to authorship (ICMJE, 2021; Psychiatric Services, 2019), while the non-professionals claimed invitation based on substantial contribution was implicit in the collaboration and guidelines as an authorship criterion. Complicating matters was that authorship wasn’t disputed until after publication because researchers did not know a manuscript was being prepared and submitted. While substantial contributions are widely held as cornerstone criteria for publication authorship (Marušić et al., 2011), and one study showed 92% of postdoctoral fellows consider participating in study design as central to authorship (Eastwood et al., 1996), non-professional researchers on the team made assumptions that their contributions to study design qualified for authorship invitation, and were therefore unprepared to encounter diverging guidelines among publications and between colleagues about authorship definition.

Resolving disputes

Dispute resolution in academic publishing contexts generally relies less on editorial norms than institutional ones, and rises up the chain of institutional hierarchy with more senior authors or researchers arbitrating conflict. Where research teams are constituted outside of formal institutional structures, however, the dilemma of the original dispute is compounded. Not only is authorship contested, but how to resolve the dispute itself now arrives at an impasse. And because authorship questions are traditionally determined by institutional authority, this can magnify the existing power imbalances that inclusion of survivor-led research sought to redress (Newman and Jones, 2006). Such dilemmas are common in authorship disputes. A study of short-term contract researchers found that “because of hierarchy and the status of senior academics, there were often no formal avenues of appeal against authorship decisions made by the principal investigator. Resolution of difficulties was often too subjective and dependent on personality, instead of on policy” (Newman and Jones, 2006). Historically disadvantaged groups, disproportionately represented in the Psychiatric Services research team, can find obstacles compounded: one study found even well-prepared projects had a higher incidence of disputes involving women researchers, who face legacies of exclusion in research (Ni et al., 2021).

The ICMJE and COPE recommend that authorship disputes be resolved by the researchers working out their differences on their own; journals are ill-equipped to investigate or mediate (Albert and Wager, 2009). The problems with this reliance on internal dispute resolution include power differentials, misuse of power by senior researchers, and the greater likelihood of outcomes unfavorable to under-represented and vulnerable groups (Faulkes, 2018). Elsevier recommends contacting the corresponding funding agency to work for resolution, but funders are interested parties: they may not approach disputes impartially, may be reluctant to get involved, may seek to avoid any appearance of difficulty in order to protect their reputations, or may fear legal exposure (Elsevier, 2021). Researchers affiliated with the Psychiatric Services paper did approach the Foundation for Excellence in Mental Health Care/Open Excellence, the study’s funder, but the foundation declined to offer a pathway to resolution or disclose the contract associated with the research. Thus, while internal resolution is typically out of reach, there are also no recognized avenues elsewhere to seek help (Seeman and House, 2015).

Unresolved authorship disputes can result in “reputational harm” to innovation in research, setting back emerging fields and erecting additional barriers to the incorporation of survivor leadership in new settings (Rasmussen, 2019). The impact can be worsened in emerging arenas of patient and survivor collaboration in research, where newcomers may become discouraged to embark on future endeavors. Career professional researchers may take such conflicts in stride, as part of the initiation into academic culture. For patient and survivor participants, however, unresolved disputes can spell an end to their interest in contributing to research altogether.

Recommendations

Collaborations between professional and nonprofessional researchers remain uniquely vulnerable to the difficulties of authorship disputes that are common in the field. The Psychiatric Services example suggests lessons to help researchers succeed across differences in background, power, and experience—lessons that may be especially important to protect the innovative and sometimes fragile efforts of patient involvement and survivor leadership in research (Smith et al., 2019).

Researchers : The importance of good business practices may be unfamiliar to patient participants and survivor researchers new to professional collaborations and accustomed to the trust networks characteristic of community activism. These include documenting all agreements in writing rather than opting for verbal discussion, relying on clear contracts, and ensuring transparency of a written record of individual contributions, all as conditions for entering a collaboration. New researchers will benefit from explicit prior education around authorship criteria and open discussion about publication expectations. Many sources, including COPE, emphasize the importance of planning authorship issues at the outset of a project (Albert and Wager, 2009; Cooke et al., 2021; Stocks et al., 2018). Authors should be familiar with authorship guidelines and advised that they collectively bear responsibility for the work; in the event of a dispute, all researchers should expect to be actively involved in reaching resolution. Recognition of patient contributions should be understood as central to publication decision making, not just a ceremonial thank you or acknowledgment.

Researchers and their sponsoring institutions can agree to alternative dispute resolution methods before entering the collaboration, with funders committing to impartial adjudication as part of grant contracts, in order to help mitigate the power imbalances inherent in team collaboration and to leverage the egalitarian ethos that often inspires volunteer participation. “People who now have the seniority to try to determine or influence authorship credit could have that power reduced if alternative dispute resolution services were well known and readily available to authors” (Faulkes, 2018). Addressing the vulnerability of short-term researchers who may leave a project team, Kings College researchers recommended arbitration and appeal for dispute resolution, with consideration for potential conflict of interest addressed by identifying an external person or panel to make impartial determinations (Newman and Jones, 2006). Peer review, including involvement of an ethics expert, is also suggested as an alternative to mediation or arbitration, utilizing an outside third party to investigate and complete a full review of the issues, conducted transparently and with avenues for appeal (Master and Tenenbaum, 2019).

Where available avenues appear exhausted and disputes find no resolution, as with the Psychiatric Services publication, researchers can seek to hold the experience as an open inquiry, even if they have ended their collaboration and parted ways. The dispute accompanies informally the history of publication, and, when acknowledged transparently, becomes an ongoing invitation to further deliberation, which may still yield unexpected lessons and new opportunities for inclusion of patients and survivors in research. Institutional and formal remedies may be out of reach, but an informal attitude of openness by professionals can help build bridges to renewed future efforts.

Journals : If a journal brings a dispute to an associated institution but the institution does not pursue an investigation, one solution is to attach an “expression of concern” to the published article once it is available, to raise awareness of a possible problem in a published paper. These are a relatively new, rare, and non-standardized type of editorial notice compared to corrections or retractions, with considerable differences among journals (Vaught et al., 2017). The COPE guidelines suggest editors consider an expression of concern if they receive evidence of misconduct that is inconclusive; affiliated institutions are presented with evidence but will not investigate; they believe investigation has not been or would not be impartial, or an investigation is underway, but a judgment is not available at the time of publication (Committee on Publication Ethics, 2018). Journals can also use expressions of concern to signal their commitment to inclusion and public participation in research where there is a possibility that contributions may not have been properly valued.

Journals can also ask for disclosure of authorship disputes at time of submission. Since unresolved authorship disputes hinder the likelihood of publication, requiring disclosure would provide an incentive for researchers to resolve conflict or face manuscript rejection. As Strange has noted, “No reputable journal that I am aware of will publish a manuscript if there are disagreements over its authorship or content. Therefore, failure to agree on authorship effectively renders the manuscript unpublishable. This is a disturbing but unassailable conclusion and underscores the critical importance of working diligently to avoid authorship problems from the outset” (Strange, 2008).

Especially in the internet era of rapid availability of up-to-date information, some scholars have suggested journals use a “contributor-guarantor” model around authorship designation, which may be better suited to prevent misconduct. In such a model all contributors are described in detail for their specific contributions, and those responsible for the work are designated as “guarantors” (Leash, 1997). Such an approach, including utilizing the “CRediT” role taxonomy, would have the advantage of providing granular transparency around the generation of the research and the creation of the resulting publication, rather than being confined to the less explicit author-or-acknowledgment-or-citation model that prevails today (McNutt et al., 2018). “Contributor-guarantor” models can also highlight contributions not ordinarily recognized in academic settings, such as the roles of community advocates and volunteers. Published works could be linked to associated explanatory texts with details about each contributor and their precise contribution, rather than forcing readers and institutions to rely on more limited understanding of how a paper came to be published. Detailing contributions in this way would also better fit with a survivor and advocate ethic emphasizing attention to power relations in research contexts.

Finally, Faulkes (2018) has noted that “rather than viewing authorship disputes as rare events that must be handled on a case-by-case basis, researchers and journals should view the potential for disputes as predictable, preventable, and soluble.” The difficulties of collaborating across differences of background and power might be best understood as opportunities for continued learning and growth. Professional researchers can establish an attitude of mutuality and shared learning with patient participants, rather than a top-down view of informants as resources to be used. “We are doing research and we will let you have input” may need to be reformulated as “We are doing research as co-equals, including leading to publication. We expect to encounter conflict, which we will then approach generatively to further both our research aims and the collaboration itself.”

Such an approach could replace acrimonious disputes, which set back shared goals and drive apart those from different backgrounds, with creative opportunities supported by outside accountability. By bringing authorship disputes and misconduct allegations out of the shadows in this way, conflict might become less of an obstacle to non-professional participation. Patient and survivor inclusion in research remains an imperative for science as a whole, and better preparation for conflict, especially around authorship, can help support future collaborations in diverse teams and promote greater understanding of ethical responsibilities in publication.