Will Hall, Monica Cassani, and Dina Tyler
May 25, 2021
In the world of innovations in how we treat survivors of psychiatric crisis, Live and Learn Inc and Open Excellence/Foundation for Excellence in Mental Health Care do valuable work. Live And Learn is a research company owned by Laysha Ostrow that collects and analyzes data on the viability of alternative mental health treatments, and Open Excellence/FEMHC is a philanthropy started by patients’ family members that channels funding into promising projects. They’re colleagues with us in the broader “critical psychiatry” movement ((Will was one of the original founding board members of Open Excellence/FEMHC) and we’ve all known each other for many years. At the same time, after collaborating with Live and Learn and Open Excellence/FEMHC on a past project, we are left very concerned by apparent ethical irregularities, including possibly crossing the line into research misconduct and plagiarism.
Overview
In a nutshell, the problem is this: psychiatric survivor volunteers created a research project that was then funded by the Open Excellence/FEMHC (this is an earlier project begun in 2014, years before the PhD study Will is currently doing). We ran into a number of ethical issues – misrepresenting who did the work, submitting different paperwork than was agreed to – but when we raised questions about these issues it led to dissolving the team. The research was turned into two published papers with new people, and original team members who made substantial contributions to the research – including conceiving the project and co-designing the survey – were excluded from invitation to publication authorship, violating ethical standards in research and publications. Data were withheld from our review and money was spent without clear accounting. Working collaboratively with others and then walking away to publish without them appears to be plagiarism. Funding a project with possible plagiarism and unclear finances and then not investigating it sounds like misconduct.
Our requests to both Ostrow and Open Excellence/FEMHC for third party, neutral mediation around all this was not agreed to. Without telling us, Open Excellence/FEMHC began an in-house investigation that amounted to accountability theater: the investigation left the key questions unasked, gave room to claim evidence cleared Live and Learn of wrongdoing when it hadn’t, and rushed to absolve Open Excellence/FEMHC of any oversight responsibility for the project it funded. Open Excellence/FEMHC says they will make no further determination in the matter, even though Psychosis journal, where one of the papers was published, also asked for a response about the authorship exclusion. (All journals have guidelines on handling misconduct, and the Psychosis guidelines direct addressing ethical concerns to the research funder.) The authors of the Psychosis paper also would not respond to us, despite International Committee of Medical Journalism Editors (ICMJE) guidelines requiring authors “to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.”
That’s our understanding of where things stand now.
We aren’t raising this question in public lightly. We worked persistently behind the scenes to get things resolved directly and privately, asking key questions and speaking with the authors and institutional actors involved, in several years of back and forth effort. We consulted and followed guidelines for academic research complaints: first we addressed the other researchers, and then we escalated to the publisher and funder when we reached an impasse. We are very discouraged and saddened to write that after this careful process, Live and Learn and Open Excellence/FEMHC remain extremely troubling ethically. There were plenty of opportunities to find a different way, but we reached a point where this is just not something we can go along with or condone by keeping private. We don’t want others to face the same experience we did, or feel they have to keep silent when ethical issues go unresolved.
We hope making our concerns public leads to a resolution (or at least serves as a cautionary tale). Third party mediation is still warranted and available, and positive steps are possible: Psychosis journal can take action if Open Excellence/FEMHC makes a determination about the research it oversaw, and the other journal where a publication appeared, the American Psychiatric Association’s Psychiatric Services, can be corrected if Live and Learn recognizes that what is now published is inaccurate.
We want everyone to work differently in research collaboration with volunteer activists in the future. And maybe public scrutiny will encourage others to rise to higher ethical standards and speak up when they spot problems. It’s not in our nature to give up hope, and if the situation does improve or change – or we come across anything we missed or misunderstood in what we’ve written here – we certainly will update this blog post. (We sent a draft to Ostrow and to the Open Excellence/FEMHC Board.)
The details:
Will conceived and initiated the medication withdrawal research project in 2014, and his idea was along the lines of the UK MIND “coping with coming off” study: ask people who had successfully come off psychiatric meds about what they went through. The need for medication research was discussed at Freedom Center for years, back when coming off meds was a more forbidden subject. The positive reception to Freedom Center and Icarus Projects’ Harm Reduction Guide to Coming Off Psychiatric Drugs inspired Will to get the project started, to help fill a gap in existing research with the aim of better care for people making difficult medication withdrawal decisions.
The first step was that Will approached a colleague researcher and began to develop ideas for the project, including (as documented in the email archive, available if anyone would like to look at it) that volunteers and professionals would collaborate mutually. The colleague referred Will to Ostrow, and Will asked her to coordinate the research team, invited Dina and Monica, located a funder, and got the project going; others then joined. From the beginning Will welcomed inclusive involvement, in the collective spirit of the survivor movement and the way he has worked since co-founding Freedom Center and joining the Icarus Project collective. We all went in trusting each other as equals, as well as trusting the institutional administrator and funder, Open Excellence/FEMHC, who agreed to fund the project for $50,000.
We (Will, Monica, and Dina) all worked closely together with Ostrow and other team members on drafts of the survey and study design, discussing how to interpret results, recruiting, and how to conduct the study. We met as a team regularly on video calls, through an email discussion list, and a shared google doc where we all drafted the project survey in back and forth exchanges. On this original team, only the three of us (Will, Monica, and Dina) had any direct counseling experience helping other people come off medications: Will has worked with people coming off medications as a counselor, group facilitator, and teacher for many years; Dina was named Peer Specialist of the Year; and Monica has received awards for her blog and online community Beyond Meds. The study design leaned heavily on our experience.
There was a shared inspiration and excitement to be doing important groundbreaking work in a team together, a team that was itself innovative, joining professionals and professionals who were survivors with survivor volunteer activists. It was also clear from our contributions that our role – including Will conceiving, initiating, and designing the work – could only be described as substantial. Once underway, our substantial contributions meant the project didn’t just have an ethos of inclusion: everyone now had an ethical responsibility of inclusion for anything resulting from the project, including any later publication. And this was not only our shared understanding, but is formalized in institutional ethical standards: the International Committee of Medical Journalism Editors (ICMJE) guidelines, considered a gold standard, recommends the following 4 criteria for authorship – and explicitly anticipates the very situation of misconduct we would later confront:
- Substantial contributions to the conception or design of the work; or the acquisition, analysis, or interpretation of data for the work; AND 2. Drafting the work or revising it critically for important intellectual content; AND 3. Final approval of the version to be published; AND 4. Agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved….These authorship criteria are intended to reserve the status of authorship for those who deserve credit and can take responsibility for the work. The criteria are not intended for use as a means to disqualify colleagues from authorship who otherwise meet authorship criteria by denying them the opportunity to meet criterion #s 2 or 3. Therefore, all individuals who meet the first criterion should have the opportunity to participate in the review, drafting, and final approval of the manuscript. (ICMJE, 2019)
Signs the project was headed for an ethical crisis emerged early on. We were funded and mandated to study people who’ve come off medication completely. But new language was introduced by Ostrow, without discussion or agreement, to recruit anyone who attempted to withdraw – whether they came off or not. This raised the question: without any stated quota of complete withdrawers, was the study at risk for shifting focus – from recruiting people who came off successfully to recruiting people who attempted to come off but couldn’t? That might be a valid new direction, but shouldn’t that be clarified and carefully discussed, with the entire team and especially with the funder and sponsoring institution, before proceeding? Research does sometimes change focus or alter plans after getting started, but wouldn’t any change need approval? Ostrow wouldn’t answer when we raised these questions, and it was only as Will persisted and tensions grew that an understanding was finally reached to maintain the study original focus.
Then a more troubling concern appeared. The group as a whole drafted and agreed on a research plan and Institutional Review Board (IRB) proposal, language which specified everyone was on the research team. (The proposal was to be submitted to the IRB associated with Human Services Research Institute, hired by Open Excellence/FEMHC under a contract with Ostrow.). But when Ostrow submitted these proposals, she used different language: the new language now formally excluded people from the research team – the three volunteer activists Will, Monica, and Dina. We were now set in a different category of “stakeholders,” a term used in research that implies a clear hierarchy. In research stakeholders are defined as the population being studied and the group that stands to benefit from the study. Stakeholders are not equal partners with researchers or collaborators on a research team: they are not the researchers, they are the objects of the research.
Ostrow claimed the exclusion from the research team and recategorization were merely technical, necessary because some of us, she said, were unqualified as unpaid staff and who hadn’t completed ethics training. No one had suggested we weren’t qualified prior to starting our work as a team together. We had collaborated for months where we were all clearly understood to be on a research team together, and then suddenly we were told we were not on the team? This felt alarming, not merely a technicality. And wouldn’t it be unethical to misrepresent the work already done to the IRB, erasing the three volunteer survivors? Acknowledging to the IRB who had already been working on the research team seemed, to us, the only way to honestly describe the project. (And wasn’t the whole idea of research IRB’s in the first place to protect the interests of vulnerable people – such as psychiatric survivors?)
When we did a little checking we learned that no, being paid staff or having ethics training don’t in fact present any obstacles to being on a research team. (And, in fact, Dina received Highest Honors for her UC Berkeley undergraduate sociology research thesis on pediatric bipolar, and had actually already completed a research ethics training. Will found an ethics training course he completed in an evening.) So there didn’t appear to be any valid reason to change the research plan and IRB proposal language, and suddenly take our names off the team we had been working together on for months. Why did Ostrow do this? Formal shared recognition and collaboration was at the core of how the project was conceived; joint ownership of the research was our assumption all along. Excluding us from the team shifted the balance of power and put us outside and at the bottom. When none of this was explained, we started to sense something very wrong was going on.
We insisted on asking questions: why were we told one thing then something different was submitted? Why were we now told we were off the team? Why were what appeared to be pretexts used to justify this? Couldn’t Ostrow just re-submit the accurate language we had all agreed on so we could get back to work? Instead of answering, Ostrow told Will he was removed from the project entirely. To us this looked like retaliation: the project founder and a team member became increasingly concerned by ethical questions and a shift in power, and was suddenly told he was off the project. And then a new, bigger, surprise: Open Excellence/FEMHC informed all of us that they backed Ostrow. Neither Will nor anyone else had ever agreed that Open Excellence/FEMHC could take this project as their own and make such a decision. Putting money into it didn’t mean they were entitled to just let someone walk away with the project, a project that came out of the Freedom Center, that Will conceived and initiated, and that survivor activists had volunteered for. We were all in shock.
There were no hallmarks of due process in the decision to remove Will (meaningful notice, opportunity to be heard, a neutral decision maker), no evidence presented, or any chance for him to reply. The decision was an unexpected announcement on a phone call, which Monica and Dina were not allowed to join. Ostrow’s explanation was that Will was removed because he had become difficult to work with. Will was certainly asking hard questions, but it was the lack of answers that made things difficult. Emails documenting the sequence of events show the team collaborating until right after Will kept raising these ethical concerns, and don’t show evidence that Will caused project delays. At this point, Open Excellence/FEMHC, as the funder with final oversight, could have set up a neutral resolution process to resolve things, saying No, you can’t just exclude people, you have to work this out. Instead, Open Excellence/FEMHC just took Ostrow’s side. This was of course unsustainable, and the problem only grew larger.
New researchers were brought in. Dina had not been removed from the team, but she now found herself, with no explanation, also excluded (Monica stopped trying to be included because of health reasons). The survey in draft form was rushed out to release. As survey responses started to come in, none of us were allowed to see any of the survey data: we were shut out of a project Will had conceived, we all had worked to design, and all of us put our enthusiasm and excitement – and trust – into (the data remained private for several years). The $50,000 grant budget originally included site visits, interviews, and a qualitative component – all labor intensive. But the project was for some reason scaled back to a simple web survey to several hundred people, without a budget adjustment. (When we asked we were told “research is expensive,” but other researchers in the field didn’t corroborate that $50,000 is common for a short several hundred person web survey. We were not allowed to see the final financial accounting, nor were we even allowed to see the Open Excellence/FEMHC contract for the project itself or with HSRI and the IRB.)
Since all this happened, the respondent data was collected and analyzed and used in two publications so far: the American Psychiatric Association’s Psychiatric Services journal, and Psychosis journal. The original team wasn’t given the opportunity to participate in authorship and publishing: new people, who had not been with the project from the beginning, became authors instead. Dina, who had made substantial contributions to the research, was at first asked to be part of preparing for publication, but then wasn’t invited to be an author.
With publication now entering the picture, new, even more serious, ethical questions emerged: intellectual property and authorship.
When several people collaborate and make substantial contributions to research, one of them can’t just go off and publish with their name as an author and call the work solely their own. Once substantial contributions are made, and unless you signed some other agreement, you have a stake in what is created (and here the agreement – as documented by the email archive – was explicitly collaborative, with shared invitation to authorship assumed). If the contributions made by researchers were insignificant – such as proofreading or social media promotion for example, or chiming in with limited feedback – then yes, others can publish as the authors and just credit your name in an acknowledgement. But this was a situation where substantial contributions were made – including conceiving and initiating the project in the first place, assembling personnel, drafting the survey and study design, being part of analysis discussions, and bringing specialized expertise in medication withdrawal to bear. Ethical guidelines of the ICMJE, as well as common sense, are clear: if you contribute substantially, you need to be invited to be an author in any publishing.
And that’s true even if someone is removed from a formal role. Telling someone they are on a team, then telling them they aren’t, they are now just a stakeholder, or expelling them off the team entirely, doesn’t erase work already performed. If it did, more powerful institutional actors could simply collaborate with someone, benefit from their substantial contribution, then kick them off and take credit for their work with impunity. The ICMJE explicitly recognizes contribution alone as the criteria for authorship.
So despite making substantial contributions to the research (even in Will’s case conceiving and initiating the entire project), original team members weren’t invited to authorship of the two publications. The common sense understanding of plagiarism is “representing the creative work of others as your own.” Now, since one party had walked away and put their name as author on publications based on work others had already made significant contributions to, the medication withdrawal project risked crossing the line to plagiarism.
In researching all this, Will looked at what everyone in the survivor movement and critical psychiatry world already knows – that authorship ethical problems are widespread in psychiatric journals. But this is true not just in the cases we hear most often about – ghost authorship and pharmaceutical company manipulation. It’s a problem throughout medical publishing. Contributors with less institutional power and rank frequently find themselves excluded when research reaches the publication stage, even where their significant contributions are clear and they should rightly be included. This problem is rife in academic publication: people with more clout and institutional backing just walk away with the work of others.
And it gets worse. There is evidence that this becomes a self-reinforcing cycle, because researchers who have their work taken and authorship denied, or witness it happening to colleagues, end up accepting it as normal – and being more inclined to do it themselves in the future. (Eastwood, S., Derish, P., Leash, E., & Ordway, S. (1996). “Ethical issues in biomedical research: Perceptions and practices of postdoctoral research fellows responding to a survey.” Science and Engineering Ethics, 2(1), 89–114. https://doi.org/10.1007/bf02639320). So it seems that a pattern of publication misconduct has widely corrupted medical scientific research. Does that mean we should let survivor researcher and recovery philanthropic foundations fall to the same low standard of the very system we are trying to change? We volunteered in good faith to help challenge mainstream medical research, but were we now part of the problem, not part of the solution?
Adding to the problem here is that the two journals where the research was published – the American Psychiatric Association’s journal Psychiatric Services and the smaller Psychosis journal — have different ethical guidelines they adhere to. The basic principle of “researchers should not take credit for the work of others when they publish” is clear. But the American Psychiatric Association Psychiatric Services, where the first publication to come from the study appeared, has a more lax editorial ethics standard than Psychosis journal, where the second appeared. Psychosis follows the ICMJE guidelines, which clearly spell out where substantial contributions are made, researchers must be given the opportunity to be authors. The American Psychiatric Association’s Psychiatric Services (perhaps not surprisingly) is a little bit more fuzzy.
Having met the substantial contributions criteria #1 of the ICMJE guidelines, we should properly have had the opportunity to participate in publication. We weren’t, and so the situation we face with the research project published in Psychiatric Services and Psychosis certainly looks like an example of research misconduct (or at least in Psychosis, if you want to endorse the dubious notion that ethical principles should be different between academic journals).
The Committee on Publication Ethics, formed to protect the integrity of the scholarly record across disciplines, describes this as a common scenario, a junior researcher who made substantial contributions but then their supervisor wrote up the work and didn’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, 2014)
If the opportunity was declined. But we hadn’t even been asked.
And the whole situation we found ourselves in gets even worse. Journals don’t tackle these ethical questions of contribution and authorship head on, they defer authorship ethics conflicts back to the authors themselves and their sponsoring institutions. Academic publishing thus relies on self-monitoring — and institutional politics — rather than having clear neutral mechanisms for resolving disputes. The predictable result is that the biggest and most powerful voices and players fill that void, entrenching the problem. (This by the way is the same “regulatory capture” problem at the root of so much industry corruption these days.) That leads directly to a research field undermined by authorship problems where contributors with less power and institutional authority usually lose out. And it leads to a science industry where so many graduate students accept this systematic problem as normal, and cynically describe themselves as “serfs.” Was our experience with Live and Learn and Open Excellence/FEMHC just reproducing typical science industry exploitation? Had we become serfs?
When these ethics questions originally emerged, Open Excellence/FEMHC listened to us but wouldn’t take any action or make any recommendations at all, siding with Ostrow instead of looking at any of the evidence. As the funder they should have been the oversight of last resort and the final guarantee of ethical standards: funding institutions are required in the ICMJE guidelines to be accountable for just this role. Why wouldn’t they step up? Wasn’t raising ethical alarm bells early and privately something to be encouraged, to prevent problems getting bigger (and coming out later into public scrutiny)?
As we kept at it, additional ethical questions started arising. There seemed to be a lot of conflicts of interest going on: HSRI had been financially contracted for some reason, and their director at the same time sat on the Board of the Open Excellence/FEMHC and appeared to be having a lot of say. People in formal positions who were also good friends were not recusing themselves from involvement in decisions. One of our requests for help to the Open Excellence/FEMHC Board was turned down, only to be reversed when we pointed out that Ostrow was now herself on the Board and involved in making that decision. And at one point one Open Excellence/FEMHC staff person told Will to “just let this one go” and drop his ethical concerns, because a larger grant opportunity for him was coming next. Because of all this, and a growing sense our efforts to clear things up and do the right thing were for some reason just hitting a wall, things got very confusing ethically.
Early on we saw that third party mediation through dialogue would be the best way forward. Ostrow and the other authors who joined her to publish would not agree to mediation; Ostrow said the complaints were purely groundless. Some authors involved with the Psychiatric Services paper were open to dialogue and compromise, and seemed to be trying to help things move forward behind the scenes, but the authors of the Psychosis journal, a different group, would not respond to an email inquiry. Such non-responsiveness to ethical questions is itself unethical: ICMJE guidelines require that authors adhere to an “Agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.”
Then Open Excellence/FEMHC decided, finally, to take seriously our request to investigate. But we soon discovered it was more accountability theater than actual accountability. Open Excellence/FEMHC chose an in-house person to lead it, rather than the neutral third party as requested. They also didn’t even let us know an investigation was underway until after they decided it was already completed (they said the pandemic created email problems, but wouldn’t this be something you would double check to make sure was communicated about?). The investigation didn’t focus on the authorship question of substantial contribution at all, or address any of the other ethical questions (such as the inaccurate research plan and IRB submission, whether Will’s removal was retaliatory, the financial issues or apparent conflicts of interest.) Instead the investigation focused solely on Open Excellence/FEMHC’s role, made no conclusion about any problems there may or may not have been in the conduct of the research, but did conclude that Open Excellence/FEMHC’s hadn’t done anything wrong.
The investigator, who was formally affiliated with Open Excellence/FEMHC and not a neutral party, decided — despite the ICMJE guidelines based on contribution alone — that if Will were removed by Ostrow with justification, then Will’s contributions could be disregarded as well, and he somehow could have no claim to his own work. But the investigator did acknowledge the investigation wasn’t looking into that, and to his credit added, “A key question here, though, is was Mr. Hall terminated from the study with appropriate justification? … I cannot exclude the possibility that Mr. Hall was treated unfairly.” So this was left an open question.
Strangely, the investigator wouldn’t respond to any questions about the investigation, even just to clarify things (was the investigation preliminary or final in his view, for example, and why weren’t we informed of his efforts until they were done?). And we still don’t know why he disregarded the issue of Dina’s contributions: remember that it was Will who was removed from the team: Dina wasn’t removed, and she was at first even invited to continue to be involved and then wasn’t invited to authorship, without explanation.
The investigation did however offer to mediate a compromise among everyone to publish a correction to the Psychiatric Services journal, in order to recognize the contributions made by all researchers accurately. That was encouraging, because the current Psychiatric Services language, for example, incorrectly credits Will – who conceived and initiated the project and co-designed the survey – only with “contributions to data collection”. A new email exchange was begun, with a feeling of “do-over” and maybe this will finally get put to rest.
In response Ostrow now claimed that somehow the Open Excellence/FEMHC investigation had determined there was no inaccuracy in the publication and no validity to any concerns we were raising, and so therefore no correction needed to be made. The investigation had created a momentary opening for some forward progress and compromise, but Ostrow instead used it as justification to withdraw her earlier stated openness to a published correction. She now also said that any correction to the Psychiatric Services “has the potential to compromise the benefits to individuals who find themselves struggling to discontinue medications,” but wouldn’t explain how exactly. Will requested that Open Excellence/FEMHC tell Ostrow what its investigation did and did not determine, that in fact the investigation did not determine questions of accuracy and contribution. But Open Excellence/FEMHC, out of the apparent preference for loyalty to Ostrow over neutral oversight that we still don’t understand, wouldn’t even clarify what its own investigation did and did not conclude, and instead ended the dialogue. So much for do-overs.
It seems the end result of the Open Excellence/FEMHC investigation was this: to make no determination about the substantial contributions and authorship questions, to make no determination about whether Will was removed improperly, to make no determination about whether Dina and others were excluded improperly, and to make no response to Psychosis journal. The investigation just determined that Open Excellence/FEMHC had done nothing wrong and allowed Ostrow to claim she and all the other authors had also done nothing wrong.
Available private channels now appeared exhausted, after several years of back and forth. Psychosis journal said it was unable to take any action without a determination from Open Excellence/FEMHC. Psychiatric Services is unable to take action without Ostrow’s agreement. So that’s when we decided to bring this whole matter public.
Various explanations were offered by Open Excellence/FEMHC. There have had some personnel changes, and they indicated their past ways of working relied too much on “back channels.” Fair enough, but what about their present way of working? Other explanations also seem problematic. The most prominent seemed to be to just portray the ethical issues we raised as meaningless, that the whole matter was just concocted by Will because of a personal conflict between him and Ostrow (the Open Excellence/FEMHC investigation saw fit to quote Ostrow saying that all this started because Will wouldn’t agree to a “personal relationship” with Ostrow, which only coincidentally took place when Will was raising ethical questions). In this explanation, Ostrow was in fact the victim (and the only one stressed and suffering from the conflict). Monica and Dina somehow don’t have ethical agency of their own or capacity to judge things for themselves; they were just letting their names be used in Will’s personal vendetta. Our dedication to ethical principles and advocacy, our years of volunteer work speaking truth to power, the reputations we’ve built internationally – none of this seemed to matter. In short, the only problem here was really with Will, and, well, Will is crazy.
Another explanation offered was that Open Excellence/FEMHC had put so much time and resources into this matter that they just couldn’t go on. But isn’t our time just as valuable as anyone else’s? Wasn’t the best way to resolve this to seek third party mediation early? And wouldn’t time spent on an investigation have been used more wisely with an investigation that actually addressed the main issues? How is “we don’t have any more time for this” an ethically proper response to a question of possible plagiarism in an academic publication you funded the research for? Responding to someone’s ethical questions isn’t an indulgence in supporting them and doing them a favor – they are in fact trying to help you, privately, live up to your responsibility and put out the fire at the first signs of smoke — rather than let the house start to burn.
Live and Learn and Open Excellence/FEMHC do good work, but in this situation, where we all should have been collaborating to find a solution, our persistence has instead been treated as a nuisance and public relations problem. We are left stunned at why the key people in power – Ostrow and the Open Excellence/FEMHC board – wouldn’t simply take the many opportunities offered in private to convene and implement a principled, neutral pathway for ethical resolution. Correcting mistakes – mistakes as serious as taking credit unfairly for someone else’s work, or funding without oversight – is hard to do, but not impossible. Taking a neutral position rather than siding with one party may upset someone expecting loyalty, but the sacrifice of ethical integrity is the worse choice.
We think this situation sets troubling precedents beyond just us, for research and institutional conduct in general — and doubly so in the survivor and mental health recovery movements. Until this is properly resolved it will have a corrosive and corrupting effect. If this were just some interpersonal squabble or minor misunderstanding, we could have walked away a long time ago. We really wish we could have – this has consumed way too much of our volunteer time and energy. But these are vital ethical issues: holding research accountable to higher standards is at the very heart of what our movement is about. We’ve seen too many situations of misconduct where people kept quiet – where we kept quiet – and we don’t want to live that way.
Looking forward
Our main goal is to pave a way for successful research collaborations in the future, and to restore our faith in Live and Learn, Open Excellence/FEMHC, and everyone involved. It’s crucial that there be more attempts to do research like this, not less. We do need research that brings together professional academics who know how to publish with movement activists who have extensive direct knowledge from support groups, advocacy, and peer counseling. Collaborations across power and knowledge are becoming more widespread in science and medical research in general, and such efforts deserve money and resources – and recognition for the contributions of everyone involved.
Big lingering questions or unresolved disputes hurt everyone. At worst, activists volunteering their time working with professionals can feel taken advantage of, and then leave mistrustful and discouraged from trying again. Situations like this can even erode the commitment to movement work in general: sadly, they echo the very history of how psychiatry makes use of patients, which should be exactly what we are all committed to never repeating. We can, once again, feel like disposable people, where the more institutionally powerful make use of us when convenient, then move on and leave us behind, silent and in the shadows.
All of us need to do things differently. We don’t want to live in silence in the shadows.
Live and Learn and Open Excellence/FEMHC still have a clear pathway to turn things around, and we welcome dialogue to make that happen. And for future projects, we learned some lessons:
We certainly made our own mistakes. We tend to be conflict avoidant, putting off dealing with things when we should have acted sooner. We all confused the volunteer movement world with the nonprofit and business world, naively trusting when we needed clear contracts instead. When feeling unheard, Will can get defensive, and apologizes to anyone who felt disrespected. And when Open Excellence/FEMHC and Live and Learn told Will there would be no changes, making things appear insurmountable, he consulted a lawyer, who drafted a letter about authorship responsibility under intellectual property law. This did seem to work – it resulted in an agreement and apparent resolution for the moment, where there had been no response previously. But in hindsight Will doing this had the unintended effect of leading to escalation and defensiveness all around – and the agreement was later just disregarded anyway. Since the legal letter was informative and there was no intention to follow with court action (Will doesn’t have the legal resources of a large nonprofit foundation), in the end it just became counterproductive. Lawyer involvement is a good sign the process has already broken down, and not usually a tool for rebuilding it, but when people have no recourse they are likely to turn to lawyers.
Disagreements and conflict are normal on teams, and should be expected. Projects need an atmosphere where open disagreement is welcomed as a healthy part of any creative process. Asking ethics questions must be seen as a positive check and balance, a welcome part of normal organizational activity – not a threat to authority. When conflicts arise, everyone involved should be willing to accept the transparent counsel of truly neutral adjudication. And neutral third party means just that – neutral third party. Not one party deciding “In our judgment the person we found is neutral enough.” Any perceived conflict of interest should lead to open acknowledgement and steps to remedy it, such as relying on impartial guidelines, recusal, or setting up an institutional firewall.
Disagreement or ethical questions shouldn’t be viewed as personality clashes and dismissed as interpersonal problems of getting along, regardless of how insistent one side is that they are the aggrieved party. If problems aren’t judged on the evidence, we all risk living in a “post-truth” world, where facts don’t matter, just which side you are on. Ethical principles have to be applied consistently, impartially – and impersonally. Instead of giving us the benefit of the doubt and trusting that we are in good faith trying to figure out what was going on, we had our reputations repeatedly bad-mouthed as a result of speaking up. If people are afraid of losing professional standing by telling the truth, our movement has become corrupt.
When teams involve people with widely divergent backgrounds – such as experienced professional researchers working with newcomers to a field — there should be resources in place, such as advisors and extra layers of communication, to account for differences in power. When we were told things that didn’t seem right we looked into it on our own – other researchers in a lower power position might just have gone along. Activist volunteer survivors deserve special consideration for ethical integrity. These are the movement leaders whose years of unpaid efforts made the shift to a recovery perspective – and funding and institutional power – possible in the first place. Activist involvement should be a valued cornerstone to be lifted up, not a stepping stone to be pushed away after it’s been used. Recruiting survivors just as resources is exploitation.
In the medical publishing world the ICMJE is the ethical gold standard, and provides for authorship conditions consistent with the basic principle of not taking credit for someone else’s work. That some journals – such as the American Psychiatric Association’s journal Psychiatric Services – have more lax standards doesn’t mean everyone else should. Ethical impropriety in psychiatric publishing is one of the biggest problems facing any mental health reform; any alternative approach needs to avoid the same patterns.
All researchers involved should be notified before any submission for publication. Otherwise it risks burdening a journal with finding out later that the paper they just published has open ethical questions they weren’t advised of. “No reputable journal that I am aware of will publish a manuscript if there are disagreements over its authorship or content.” (Strange, K. 2008. Authorship: Why not just toss a coin? American Journal of Physiology-Cell Physiology, 295(3), C567–C575. https://doi.org/10.1152/ajpcell.00208.2008)
Mental health organizations should also take into account mental health. Unresolved conflicts and lingering ethical problems stress out everyone and lead to toxic work experiences. The most vulnerable suffer more, even burning out and leaving the movement. Those who tolerate and adapt to toxic workplaces end up sticking around, and soon toxic behavior becomes the norm. A downward spiral accelerates.
We’re told that Open Excellence/FEMHC is making policy changes as a result of our complaints – a good first step. How about creating a Survivor Advisory Council, to balance Open Excellence/FEMHC’s existing Scientific Advisory Council and help ground all work in the highest ethical standards and the values of survivor experiences? How about membership structure with elections to Boards and leadership, to devolve power from professionals, historical elites, and the wealthy? Open financial accounting? Setting up a neutral ethics panel, with survivor guidance? (Hearing Voices USA has recently been working on positive steps to set up improved procedures – maybe they can help). What if Open Excellence/FEMHC sponsored a public Town Hall to discuss this whole experience and create a restorative dialogue for lessons learned and how to move forward together?
We’re glad to have participated in a project that resulted in two excellent published scientific articles that advanced knowledge about coming off psychiatric medication. But we’re also disheartened that Live and Learn, Ostrow, and Open Excellence/FEMHC had opportunities to step up and resolve ethical questions but, for some reason we still don’t understand, wouldn’t. Everyone here deserves encouragement for innovative work in an under-researched topic area of tremendous importance to survivors. Problems with working together are part of life and mistakes get made, and sometimes publicly sharing about what we’ve been through can help us all learn to work better in the future.
Because we still consider this an evolving conversation, we’ll make sure to update this blog post with any new developments (we’ve also sent previous drafts to Live and Learn and Open Excellence/FEMHC). And if anyone has any questions for us – for example, wanting to take a look at the documentation on the project (the email archive and shared files) that show the project’s evolution and timeline of events – please feel free to contact us.
We hope that by taking the risk of speaking up and seeking change, we can inspire others to feel free to come forward when they need to.
— Will Hall, Monica Cassani, and Dina Tyler
**Update 10/2022**
Research Ethics, a peer reviewed journal, has published Will’s paper “Authorship disputes and patient research participation: collaborating across backgrounds”, as a Case Report. Will’s PhD committee invited him to write about the larger ethical issues of survivor research contributions raised by this matter, including ways forward when dispute resolution reaches an impasse. The paper is available via open access, here: journals.sagepub.com/doi/10.1177/17470161221134023
**Update 9/2022**
After we sent our May letter, Open Excellence/Foundation for Excellence in Mental Health Care (OE/FEMHC) still has not made any simple confirmation or recognition to the journals involved that Yes, Monica, Dina and Will did make the substantial volunteer contributions to this research that we made. OE/FEMHC also has not forwarded our letter to their Board and Scientific Advisory Council, and it unclear if they are aware of things.
OE/FEMHC provided no explanation about why it won’t acknowledge volunteer work done for its project. OE/FEMHC directly benefitted from work we did, and it appears the volunteer contributions of people with psychiatric diagnosis, made in good faith and based in trust, are being erased by OE/FEMHC.
** Update 6/2022**
The research we contributed to was published, again without notifying us, in a paper in Psychosis journal. While we are glad this research is advancing knowledge in the field, we alerted the Psychosis editors about our ethical concerns. Psychosis replied that they contacted Open Excellence/Foundation for Excellence in Mental Health Care (OE/FEMHC), but that Psychosis was unable to pursue any resolution about the paper on their end because OE/FEMHC would not respond with any findings on their end – OE/FEMHC said it was not their responsibility, which is what they had said before about the publication in Psychiatric Services, where the other paper was published. However, unlike Psychiatric Services, Psychosis is a member and adheres to the guidelines of the Committee on Publication Ethics (COPE), the leading oversight body that investigates conflicts surrounding allegations of unethical conduct by publications. This made COPE’s resolution process available to us where it is not available in the Psychiatric Services paper. So we contacted COPE.
COPE conducted an investigation, and made a determination that Psychosis had in fact acted properly when it asked OE/FEMHC to respond, and that because OE/FEMHC did not respond with any finding about the situation. Psychosis was correct in not being able to take action. This is the first time an independent third party has weighed in.
We had from the beginning gone to OE/FEMHC to take action and were confused when OE/FEMHC kept telling us it wasn’t their responsibility – this just didn’t feel right, but we had nowhere to go to back us up. Now COPE’s determination has agreed with us that Yes it was correct for us to ask OE/FEMHC to act. In essence for years we had been hearing “that’s not our responsibility,” and now an authoritative body was saying, The buck stops here. It is a relief to finally have an official third party tell us something that seemed reasonable and obvious to us all along.
With this new development, we then submitted a letter to all Board members of OE/FEMHC, advising them of the COPE determination and asking to reconsider the matter. We told OE/FEMHC that “The COPE report presents a renewed opportunity for OE/FEMHC to support proper resolution of a concern arising from its research, and respect and acknowledge work done by survivor volunteers.” We asked, in light of this new development, to make the simple finding that Yes of course we had made substantial contributions to the research, and submit this finding to Psychosis.That substantial contributions were made has never been in dispute, since the project was conceived and initiated solely by me, and no definition of “substantial” could possibly deny this. (Psychosis however has no basis to agree or disagree with that, since the research was not done by them but by OE/FEMHC. Hence COPE saying it made sense for Psychosis to ask OE/FEMHC about it.) OE/FEMHC confirming our contribution to Psychosis would allow Psychosis to then take action – such as a Correction that would explain our contributions accurately – and move all of this, finally, closer to resolution.
In our letter to OE/FEMHC Board members we also asked for “attention to conflicts of interest related to OE/FEMHC deliberations in this matter, such as financial, professional, and personal ties by Board members to parties involved” (see above for a discussion of some of these apparent conflicts of interest). Kermit Cole of OE/FEMHC replied he would recuse himself accordingly, which we appreciate.
We are awaiting a response from the OE/FEMHC, and remain hopeful that new steps can be taken to bring OE/FEMHC, this research, and the publications that resulted from it into compliance with ethical publication guidelines. We continue to believe that when survivors volunteer time to philanthropies conducting research, our contributions must be properly recognized and valued, and that survivor volunteers should not be made to just go along with research that we feel has ethical problems in how it was conducted. Transparency and accountability are non-negotiable cornerstones of this work; anything short of this sets a dangerous precedent. To just “let this go” and accept this situation would violate the principles and values to which we have dedicated our lives.
The COPE report is here, and our letter to the OE/FEMHC is here.
Will Hall is a schizophrenia diagnosis survivor and a longtime organizer with the psychiatric survivor movement, including being a founding Board member of Foundation for Excellence in Mental Health Care (now called Open Excellence) and co-founder of Hearing Voices Network USA. He can be reached at wiltonhall [at] gmail.com +1 413 210 2803.
Monica Cassani is a psychiatric survivor and worked as a social worker in the system for 15 years. She is the author and editor of Beyond Meds: Everything Matters, a leading mental health resource that has helped thousands of people.
Dina Tyler is a psychiatric survivor and was awarded 2015 Peer Specialist of the Year. She is a a counselor and consultant, and is co-founder of Bay Area Hearing Voices and the Bay Area Mandala Project.
Everything matters 