No author left behind:  Getting authors published who cannot afford article processing charges

Efforts to promote open access publishing ignore the many scholars who cannot afford the article processing charges of quality open access journals. Their situation may be about to get worse.

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Efforts to promote open access publishing ignore the many scholars who cannot afford the article processing charges of quality open access journals. Their situation may be about to get worse.

open accessOpen access has turned out to be a misnomer. Of course, free access to research findings is good for science and society. However, open access is clearly not freely open to the scholars who are required to pay exorbitant fees to publish their results, often out of their own pockets.

Andrew V. Suarez and Terry McGlynn 

  • Current proposals for accelerating a transition to full open access for all scholarly articles focus primarily on readers who cannot obtain paywalled articles that require a subscription or privileges at a library with subscriptions.
  • Much less attention to the many prospective authors who cannot pay article processing charges (APCs), but who fall outside a narrow range of eligibility for APC waivers and discounts.
  • This bias perpetuates global and local social inequalities in who gets to publish in quality open access journals and who does not.
  • Many open access journals provide explicit guidelines for authors from particular countries obtaining waivers and discounts, but are deliberately vague about policies and procedures for other classes of authors.
  • Many prospective authors lack resources for publishing an open access journal without having to pay out of their own pockets. They also lack awareness of how to obtain waivers. If they apply at all, they may be disappointed.
  • As an immediate solution, I encourage authors to query journals about waiver policies and share their experience in whether and how they obtain waivers with others in their social networks.
  • For a short while, it is also possible to provide feedback concerning implementation of an ambitious Plan S to encourage and require publication in open access journals. Read on and provide feedback while you can, but hurry.
  • In the absence of corrective action, a group of funding agencies is about to strengthen a model of open access publishing in which the costs of publishing are shifted to authors, most of whom are not receiving or applying for grants. Yet, they will effectively be excluded from publishing in quality of open access journals unless some compensatory mechanism is introduced.

Open access improves health care, especially in less resourced environments.

Open Access involves providing unrestricted free online access to scholarly publications. Among many benefits, open access facilitates clinicians, policymakers, and patients and their caretakers being able to obtain information for decision-making, when they lack subscription to paywalled journals or privileges at a library that subscribes.

The transition from the originally paywalled electronic bibliographic resource Medline to the open access PubMed and Google Scholar meant that without open access, such stakeholders could obtain titles and abstracts through, but making decisions only on this information can prove risky.

PLoS Medicine article noted:

Arthur Amman, President of Global Strategies for HIV Prevention, tells this story: “I recently met a physician from southern Africa, engaged in perinatal HIV prevention, whose primary access to information was abstracts posted on the Internet. Based on a single abstract, they had altered their perinatal HIV prevention program from an effective therapy to one with lesser efficacy. Had they read the full text article they would have undoubtedly realized that the study results were based on short-term follow-up, a small pivotal group, incomplete data, and unlikely to be applicable to their country situation. Their decision to alter treatment based solely on the abstract’s conclusions may have resulted in increased perinatal HIV transmission.”

Advancing open access for readers, but not for authors

wellcome trustCurrently initiatives underway to accelerate the transition to full and immediate open access to scientific and biomedical  publications:

“After 1 January 2020 scientific publications on the results from research funded by public grants provided by national and European research councils and funding bodies, must be published in compliant Open Access Journals or on compliant Open Access Platforms.”

Among the proposed guiding principles are:

“Where applicable, Open Access publication fees are covered by the Funders or universities, not by individual researchers; it is acknowledged that all scientists should be able to publish their work Open Access even if their institutions have limited means.”

And

“The journal/platform must provide automatic APC waivers for authors from low-income countries and discounts for authors in middle-income countries.”

Stop and think: what about authors who do not and cannot compete for external funding? The first 15 funders [there are currently 16]  to back Plan S accounted for only 3.5% of the global research articles in 2017, but their initiative is about to be implemented, more broadly mandating open access publishing.

Enforcing author‐pay models will strengthen the hand of those who have resources and weaken the hand of those who do not have, magnifying the north‐south academic divide, creating another structural bias, and further narrowing the knowledge‐production system (Medie & Kang 2018; Nagendra et al. 2018). People with limited access to resources will find it increasingly difficult to publish in the best journals. The European mandate will amplify the advantages of some scientists working in developed countries over their less affluent counterparts.

The author‐pays inequality may also affect equity of access within countries, including those considered developed, where there can be major differences between different research groups in their ability to pay (Openjuru et al. 2015). It is harder for disadvantaged groups from these jurisdictions to appeal for waivers (Lawson 2015), deepening the divide between those who can pay and those who cannot.

What exists now for authors who cannot afford article processing charges

What happens for authors who do not have such coverage of APCs– clinicians in community settings, public health professionals, independent scholars, patients and their advocates, or other persons without necessary affiliations or credentials who are nonetheless capable of making a contribution to bettering science and health care? That is a huge group. If they can’t pay, they won’t be able to play the publishing game or will do so in obscurity.

Too much confidence being placed in solutions that are too narrow in focus or simply do not work for this large and diverse group.

doaj logo_squareSolutions that are assumed to work, but that are inadequate

  1. Find a high quality open access journal using the DOAJ (Directory of Open Access Journals). Many of the journals that are indexed in this directory have free or low APCs.

The Directory of Open Access Journals is a service that indexes high quality, peer reviewed Open Access research journals, periodicals and their articles’ metadata. The Directory aims to be comprehensive and cover all open access academic journals that use an appropriate quality control system (see below for definitions) and is not limited to particular languages, geographical region, or subject areas. The Directory aims to increase the visibility and ease of use of open access academic journals—regardless of size and country of origin—thereby promoting their visibility, usage and impact.

DOAJ currently lists over 12,000 journals from 129 countries. It is growing rapidly, with 2018 being the best year to date. Over 1,700 journals were added. Reflecting the level of quality control, DOAJ in the same period rejected without review over 2000 poorly completed applications for journals to be included, removing them from the system so that they would not end up with the editorial teams.

Impressive? Sadly, a considerable proportion of DOAJ listed journals are obscure, narrow in specialization, and often not even listed in PubMed or Web of Knowledge/Web of Science. This is particularly true of the DOAJ journals without fees. Eigenfactor.com did an analysis of over 400 open access journals without APCs and found only the top 31 had a JIF greater than 1.00. Only the top 104 had an impact factor above 0.500. The bottom quarter of journals had JIFs of less than 0.16.

A low impact journal can still be valuable in some contexts, especially if it is in a highly specialized field or contains information relevant to stakeholders not read English. However, even in modestly resourced settings that do not cover authors’ APCs, there are commonly pressures to publish in journals with JIFs more than 1.0 and stigma and even penalties for publishing in lower impact journals.

  1. Apply for waivers or reduction in APCs through a Global Initiative Program. Current proposals are for all journals to establish such programs. Most current programs are for countries on the United Nations Least Developed Country List or countries with the lowest Healthy Life Expectancy (HALE). The PLOS website description of this program for PLOS is particularly clear.

PLOS GLOBAL PARTICIPATION INITIATIVE

The PLOS Global Participation Initiative (GPI) aims to lower barriers to publication based on cost for researchers around the world who may be unable, or have limited ability, to publish in Open Access journals.

Authors’ research funded primarily (50% or more of the work contained within the article) by an institution or organization from eligible low- and middle-income countries is automatically eligible for assistance. If the author’s research funder is based in a Group 1 country, PLOS will cover the entire publication fee and there will be no charge. For authors whose research funder is part of Group 2, PLOS will cover all but part of the publication fee — the remaining publication fee will be $500 USD.

Stop and think: For scholars in Group 2 countries [Click and see which countries these are and which countries are excluded from any such relief. You may be surprised.], how many can come up with $500 per paper? To get concrete, consider a recent PhD in a Group 2 country who is forced to work in the service sector for lack of academic opportunities who needs two quality publications to improve her chances of receiving a postdoctoral opportunity in a better-resourced setting.

  1. Apply for a waiver based on demonstration of individual need and inability to pay. Some journals only provide waivers and discounts to authors in Group 1 or Group 2 countries. Other journals are more flexible. Authors have to ask, and sometimes this must occur before they begin uploading their manuscript. Here too, PLOS is more explicit than most websites and seemingly more generous in granting waivers or discounts.

PLOS PUBLICATION FEE ASSISTANCE PROGRAM

The PLOS Publication Fee Assistance (PFA) program was created for authors unable to pay all or part of their publication fees and who can demonstrate financial need.

An author can apply for PFA when submitting an article for publication. A decision is usually sent to the author within 10 business days. PLOS considers applications on a case-by-case basis.

PLOS publication decisions are based solely on editorial criteria. Information about applications for fee assistance are not disclosed to journal editors or reviewers.

  • Authors should exhaust all alternative funding sources before applying for PFA. The application form includes questions on the availability of alternative funding sources such as the authors’ or co-authors’ institution, institutional library, government agencies and research funders. Funding disclosure information provided by authors will be used as part of the PFA application review.

  • Assistance must be formally applied for at submission. Requests made during the review process or after acceptance will not be considered. Authors cannot apply for the fee assistance by email or through direct request to journal editors.

The PLOS website states:

In 2017 PLOS provided $2.1 million in individual fee support to its authors, through the PLOS Global Participation Initiative (GPI) and Publication Fee Assistance Program.

That sounds like a generous sum of money. It does not distinguish between payments made through the PLOS Global Participation Initiative (GPI) and the fee assistance program requiring individual application. Consider some math.

APCs for PLOS One are currently $1,595 USD; for PLOS Biology and PLOS Medicine, $3,000 USD.

In 2017, PLOS published ~23,000 articles, maybe 80% in PLOS One.

So, a lower estimate would be that PLOS took in $35,000,000 in APCs in 2017.

The Scholarly Kitchen reports that 2017 was not a good financial year for the Public Library of Science (PLOS). Largely as a result of a continued decline in submissions to PLOS One, which peaked at over 32,000 in 2013, revenue was down by $2 million. The Scholarly Kitchen quotes the PLOS’ 2017 Financial Overview:

“All our decisions in 2017 (and 2018) have been driven by the need to be fiscally responsible and remain a sustainable non-profit organization.”

In response, PLOS is increasing APCs by US$100 for 2019.

PLOS is a non-profit, not a charitable organization. It should be no surprise that PLOS did not respond to my request that they publicize more widely details of their program to waive or discount APCs for authors outside of what is done for the Global Participation Initiative. Presumably, at least some authors who cannot pay full APCs find ways of getting reimbursed. A procedure for too easily getting waivers and discounts from PLOS would encourage gaming and authors not utilizing resources in their own settings that are involve more effort, take more time or are more uncertain in whether they will provide reimbursements.

PLOS provides insufficient details of the criteria for receiving a waiver. There is no readily available information about what proportion of requested waivers are granted or the average size of discounts.

My modest efforts to promote publishing in quality open access journals by authors who are less likely to do so

 I work with a range of authors who sometimes need assistance getting published in the open access journals that will most reach the readership that they want to influence. For instance, much probing of published papers for errors and some bad science is done by people on the fringe of academia who currently do not have affiliations. We downloaded and reanalyzed data from a PNAS article, and the authors responded by altering the data without acknowledging they had done so, reanalyzing the data and ridiculing us in a PLOS One article. We had to request a waiver of APCs formally before it was granted. I had to provide evidence of my retirement. Open access journals, like those of PLOS or Nature Springer do not grant waivers automatically for substantive criticism of published articles, even when serious problems are being identified.

As another example, patient citizen scientists have had a crucial role in reanalizing data from the PACE trial of cognitive behavior therapy and graded exercise therapy for chronic fatigue syndrome. These activists have faced strong resistance from the PACE investigators and their supporters when they attempt to publish. It is nonetheless important for these activists reach clinicians and policymakers outside of their own community. Journal of Health Psychology organized a special issue around an article by patient scientist activist Keith Geraghty, ‘PACE-Gate’: When clinical trial evidence meets open data access. A last minute decision by the editorial board (which included me) was crucial in the issue’s rapid distribution within the patient community, but also among policy makers.

A large group of authors who are disadvantaged by current open access publishing policies are early career academics in Eastern Europe and Latin American countries, whom I reach in face-to-face and web-based writing workshops. Their universities do not typically fall into group 1 or group 2 countries, although they share some of the same disadvantages in terms of resources. These ECAs often lack mentorship because the older generation academics and administrators did not have to publish anything of quality, if they often had to publish at all. This older cohort nonetheless hold the ECAs responsible for improving their institutions reputation and visibility with expectations that would be much more appropriate to properly mentored ECAs in well-sourced settings. I have heard these unrealistic expectations referred to as the “field of dreams” administrative philosophy.

It is important for these ECAs to publish in open access journals in their own language, which uniformly low JIFs and often not listed international electronic bibliographic sources. Yet, they also must publish in English-language journals of at least minimal JIF. When I discussed these ECAs with colleagues in more sourced settings, I was criticized falling into the common logical fallacy of “affirming the consequent” by assuming JIF is 1) a true measure of “goodness” and 2) that publishing in smaller, non-English journals is a penalty. My reply is ‘please don’t shoot the messenger’ or blame the victims of irrational and unrealistic expectations.

In brief trainings, I can provide an overview of the process of getting published in the quality journal in a rapidly changing time of digitalization and quick obsolescence of the old ways of doing things. Often these ECAs are struggling without a map. I can show them how to use resources like JANE (Journal/Author Name estimator) to select a range of possible journals; how to avoid the trap of predatory journals, which are increasingly sophisticated and appealing to naïve authors; creative ways of utilizing Google Scholar to be strategic about titles and abstracts; and the more general use of publisher and journal websites to access the resources that are increasingly real there. But ultimately, it is important for ECAs to gain and curate their own experiences and share them as a substitute for the mentorship and accumulated knowledge about publishing in the most appropriate journals that they do not have.

In many of these settings, there is an ongoing crucial transition with retirements opening new opportunities. Just as these ECAs struggle to gain the achievements and credentials that success in their careers require, it could be coming more difficult for them to publish in the most appropriate open access journals. Implementation of Plan S as it is currently envisioned may mean that some major funding agencies and well resourced institutions will assume more of a burden for absorbing the costs of publishing open access.

Scholars with access to international funding and coverage of the APCs required by the dominant model of open access publishing have a huge advantage over many scholars without such resources: scholars outing and correcting bad science; patient citizen scientists; and the large group of scholars disadvantaged by being in the Global South simply being many other settings incapable of providing relief from APCs. It may not be possible to fill gaps in the opportunity to publish in quality open access journals if the dominant business model continues to be author focused APCs or subsidies by publishers and journals. The gap may widen with implementation of Plan S.

global south
Global South

A closing window in which to attempt to influence implementation of Plan S…

If you are concerned about inequalities in the opportunities to publish in quality open access journals, there is a small window in which you can express your concerns and potentially influence the implementation of a broad plan to transform publishing in open access journals, Plan S of cOALition S.

coalitions-1

cOALition S is a group of national research funding organizations, with the support of the European Commission and the European Research Council (ERC), launching an initiative to make full and immediate Open Access to research publications a reality. It is built around Plan S, which consists of one target and 10 principles. Other researchers from across the world are signing on, including China in December 2018. Nonetheless, Plan S is decidedly focused on issues arising in Western Europe where there well-resourced universities have access to supportive funding organizations.

The 10 principles are no longer up for debate, but there is an opportunity to influence how they will be implemented. Until February 1, 2019, feedback can be left concerning two key questions

  1. Is there anything unclear or are there any issues that have not been addressed by the guidance document?
  2. Are there other mechanisms or requirements funders should consider to foster full and immediate Open Access of research outputs?

Please click and provide feedback now, before it is too late.

The PACE PLOS One data will not be released and the article won’t be retracted

PLOS One has bought into discredited arguments about patient consent forms not allowing sharing of anonymized data. PLOS One is no longer at the vanguard of open science through routine data sharing.

mind the brain logo

Two years have passed since I requested release of the PLOS One PACE data, eight months since the Expression of Concern was posted. What can we expect?

expression of concern-page-0

9 dot problem
Solving the 9-dot problem involves paying attention and thinking outside the box.

If we spot some usually unrecognized connections, we can see the PLOS One editors are biased towards the PACE investigators, favoring them over other stakeholders in whether the data are released as promised..

Spoiler: The PLOS One Senior Editors completed the pre-specified process of deciding what to do about the data not being shared.  They took no action. Months later the Senior Editors reopened the process and invited one of PACE investigators Trudy Chalder’s outspoken co-authors to help them reconsider.

A lot of us weren’t cynical enough to notice.

International trends will continue toward making uploading data into publicly accessible repositories a requirement for publication. PLOS One has slowed down by buying into discredited arguments about patient consent forms not allowing sharing of anonymized data.

PLOS One is no longer at the vanguard of open science through routine data sharing.

The expression of concern

actual display of expression of concern on PLOS article
Actual Expression of Concern on display on PLOS One article.

The editors’ section of the Expression of Concern ends with:

In spite of requests to the authors and Queen Mary University of London, we have not yet received confirmation that an institutional process compatible with the existing PLOS data policy at the time has been developed or implemented for the independent evaluation of requests for data from this study. We conclude that the lack of resolution towards release of the dataset is not in line with the journal’s editorial policy and we are thus issuing this Expression of Concern to alert readers about the concerns raised about this article.

This is followed by the PACE investigators’ response:

Statement from the authors

We disagree with the Expression of Concern about our health economic paper that PLOS ONE has issued and do not accept that it is justified. We believe that data should be made available and have shared data from the PACE trial with other researchers previously, in line with our data sharing policy. This is consistent with the data sharing policies of Queen Mary University of London, and the Medical Research Council, which funded the trial. The policy allows for the sharing of data with other researchers, so long as safeguards are agreed regarding confidentiality of the data and consent as specified by the Research Ethics Committee (REC). We have also pointed out to PLOS ONE that our policy includes an independent appeal process, if a request is declined, so this policy is consistent with the journal’s policy when the paper was published.

During negotiations with the journal over these matters, we have sought further guidance from the PACE trial REC. They have advised that public release, even of anonymised data, is not appropriate. As a consequence, we are unable to publish the individual patient data requested by the journal. However, we have offered to provide key summarised data, sufficient to provide an independent re-analysis of our main findings, so long as it is consistent with the REC decision, on the PLOS ONE website. As such we are surprised by and question the decision by the journal to issue this Expression of Concern.

Check out my critique of their claim to have shared data from the PACE trial with other researchers-

Don’t bother to apply: PACE investigators issue guidance for researchers requesting access to data.

Nothing_to_DeclareConflict of interest: Nothing to declare?

 The PACE authors were thus given an extraordinary opportunity to undermine the editors’ Expression of Concern.

It is just as extraordinary that there is no disclosure of conflict of interest. After all, it is their paper is receiving expression of concern because of the authors’ failure to provide data as promised.

In contrast, when the PLOS One editors placed a discreet Editors Note in 2015 in the comment section of the article about the data not being shared when requested, it carried a COI declaration:

Competing interests declared: PLOS ONE Staff

That COI aroused the curiosity of Retraction Watch who asked PLOS One:

We weren’t sure what the last line was referring to, so contacted Executive Editor Veronique Kiermer. She told us that staff sometimes include their byline under “competing interests,” so the authorship is immediately clear to readers who may be scanning a series of comments.

Commentary from Retraction Watch

PLOS upgrades flag on controversial PACE chronic fatigue syndrome trial; authors “surprised”

Notable excerpts:

A spokesperson for PLOS told us this is the first time the journal has included a statement from the authors in an EOC:

This has been a complex case involving many stakeholders and we wanted to document the different aspects of the case in a fair manner.

And

We asked if the journal plans to retract the paper if the authors fail to provide what it’s asked for; the spokesperson explained:

At this time, PLOS stands by its Expression of Concern. For now, we have exhausted the options to make the data available in accordance with our policy at the time, but PLOS still seeks a positive outcome to this case for all parties. It is our intention to update this notice when a mechanism is established that allows concerns about the article’s analyses to be addressed while protecting patient privacy. PLOS has not given the authors a deadline.

Note: “PLOS did not given the authors a deadline.”

One of the readers who has requested the data is James Coyne, a psychologist at the University Medical Center, Groningen, who submitted his request 18 months ago (and wrote about it on the PLOS blog site). Although some of the data have been released (to one person under the Freedom of Information Act), it’s not nearly enough to conduct an analysis, Coyne told us:

This small data set does not allow recalculation of original primary outcomes but did allow recalculation of recovery data. Release of the PLOS data is crucial for a better understanding of what went on in that trial. That’s why the investigators are fighting so hard.

Eventually, Coyne began suggesting to PLOS that he would organize public protests and scientific meetings attended by journal representatives.

I think it is the most significant issue in psychotherapy today, in terms of data sharing. It’s a flagrant violation of international standards.

The Retraction Watch article cited a 2015 STAT article that was written by Retraction Watch co-founders Ivan Oransky and Adam Marcus. That article was sympathetic to my request:

If the information Coyne is seeking is harmful and distressing to the staff of the university — and that’s the university’s claim, not ours — that’s only because the information is in fact harmful and distressing. In other words, revealing that you have nothing to hide is much less embarrassing than revealing that you’re hiding something.

The STAT article also said:

To be clear, Coyne’s not asking for sex tapes or pictures of lab workers taking bong hits. He’s asking for raw data so that he can evaluate whether what a group of scientists reported in print is in fact what those data show. It’s called replication, and as Richard Smith, former editor of The BMJ (and a member of our board of directors), put it last week, the refusal goes “against basic scientific principles.” But, unfortunately, stubborn researchers and institutions have used legal roadblocks before to prevent scrutiny of science.

The PLOS One Editors’ blog  post.

The Expression of Concern was accompanied by a blog post from PLOS Iratxe Puebla, Managing Editor for PLOS ONE and Joerg Heber, Editor-in-Chief on May 2, 2017

Data sharing in clinical research: challenges and open opportunities

Since we feel we have exhausted the options to make the data available responsibly, and considering the questions that were raised about the validity of the article’s conclusions, we have decided to post an Expression of Concern [5] to alert readers that the data are not available in line with the journal’s editorial policy. It is our intention to update this notice when a mechanism is established that allows concerns about the article’s analyses to be addressed while protecting patient privacy.

This statement seems to suggest that the ball is in the PACE investigators’ court and that PLOS One editors are prepared to wait. But reading the rest of the blog post, it becomes apparent that PLOS One is wavering on the data sharing policy

Current challenges and opportunities ahead

During our follow up it became clear that there is little consensus of opinion on the sharing of this particular dataset. Experts from the Data Advisory Board whom we consulted expressed different views on the stringency of the journal reaction. Overall they agreed on the need to consider the risk to confidentiality of the trial participants and on the relevance of developing mechanisms for consideration of data requests by an independent body or committee. Interestingly, the ruling of the FOI Tribunal also indicated that the vote did not reflect a consensus among all committee members.

Fact checking the PLOS One’s Editors’ blog and a rebuttal

John Peter fact checked  the PLOS One editors’ blog. It came up short on a number of points.

“Interestingly, the ruling of the FOI Tribunal also indicated that the vote did not reflect a consensus among all committee members.”

This line is misleading and reveals either ignorance or misunderstanding of the decision in Matthees.

The Information Tribunal (IT) is not a committee. It is part of the courts system of England and Wales.

…the IT’s decisions may be appealed to a higher court. As QMUL chose not to exercise this right but to opt instead to accept the decision, then clearly it considered there were no grounds for appeal. The decision stands in its entirety and applies without condition or caveat.

And

The court had two decisions to make:

First, could and should trial data be released and if so what test should apply to determine whether particular data should be made public? Second, when that test is applied to this particular set of data, do they meet that test?

The unanimous decision on the first question was very clear: there is no legal or ethical consideration which prevents release; release is permitted by the consent forms; there is a strong public interest in the release; making data available advances legitimate scientific debate; and the data should be released.

The test set by this unanimous decision was simple: whether data can be anonymized. Furthermore, again unanimously, the Tribunal stated that the test for anonymization is not absolute. It is whether the risk of identification is reasonably likely, not whether it is remote, and whether patients can be identified without prior knowledge, specialist knowledge or equipment, or resort to criminality.

It was on applying this test to the data requested, on whether they could be properly anonymized, that the IT reached a majority decision.

On the principles, on how these decisions should be made, on the test which should be applied and on the nature of that test, the court was unanimous.

It should also be noted that to share data which have not been anonymized would be in breach of the Data Protection Act. QMUL has shared these data with other researchers. QMUL should either report itself to the Information Commissioner’s Office or accept that the data can be anonymized. In which case, the unanimous decision of the IT is very clear: the data should be shared.

PLOS ONE should apply the IT decision and its own regulations and demand the data be shared or the paper retracted.

Data Advisory Board

The Editors’ blog referred to “Experts from the Data Advisory Board.. express[ing] different views on the stringency of the journal reaction.”

That was a source of puzzlement for me. Established procedures make no provision for an advisory board as part of the process or any appeal.

A Google Search clarified. I had been to this page a number of times before and did not remember seeing this statement. There is no date or any indication it was added after the rest of the statement.

PLOS has formed an external board of advisors across many fields of research published in PLOS journals. This board will work with us to develop community standards for data sharing across various fields, provide input and advice on especially complex data-sharing situations submitted to the journals, define data-sharing compliance, and proactively work to refine our policy. If you have any questions or feedback, we welcome you to write to us at data@plos.org.

The availability of data from reanalysis and independent probing has lots of stakeholders. Independent investigators, policymakers, and patients all have a stake. I don’t recognize the names on this list and see no indication that consumers affected by what is reported in clinical and health services papers have role in making decisions about the release of data. But one name stands out.

Who is Malcolm Macleod and what is he doing in this decision-making process?

Malcolm Macleod is quoted in the Science Media Centre reaction to the PACEgate special issue:

 Expert reaction to Journal of Health Psychology’s Special Issue on The PACE Trial

Prof. Malcolm Macleod, Professor of Neurology and Translational Neuroscience, University of Edinburgh, said:

“The PACE trial, while not perfect, provides far and away the best evidence for the effectiveness of any intervention for chronic fatigue; and certainly is more robust than any of the other research cited. Reading the criticisms, I was struck by how little actual meat there is in them; and wondered where some of the authors came from. In fact, one of them lists as an institution a research centre (Soerabaja Research Center) which only seems to exist as an affiliation on papers he wrote criticising the PACE trial.

“Their main criticisms seem to revolve around the primary outcome was changed halfway through the trial: there are lots of reasons this can happen, some justifiable and others not; the main think is whether it was done without knowledge of the outcomes already accumulated in the trial and before data lock – which is what was done here.

“So I don’t think there is really a story here, apart from a group of authors, some of doubtful provenance, kicking up dust about a study which has a few minor wrinkles (as all do) but still provides information reliable enough to shape practice. If you substitute ‘CFS’ for ‘autism’ and ‘PACE trial’ for ‘vaccination’ you see a familiar pattern…”

The declaration of interest is revealing in what it says and what it does not say.

Prof. MacLeod: “Prof Sharpe used to have an office next to my wife’s; and I sit on the PLoS Data board that considered what to do about one of their other studies.

The declaration fails to reveal a recent publication co-authored by Macleod and Trudy  Chalder.

Wu S, Mead G, Macleod M, Chalder T. Model of understanding fatigue after stroke. Stroke. 2015 Mar 1;46(3):893-8.

This press release comes from an organization strongly committed to the protection of the PACE trial from independent scrutiny. The SMC even organized a letter writing campaign headed by Peter White to petition Parliament to exclude universities for Freedom of Information Act requests. Of course, that will effectively block request for data.

Why would the PLOS One editors involved such a person to reconsider what been a decision in favor of releasing the data?

Connect the dots.

Trends will continue toward making uploading data into publicly accessible repositories a requirement for publication. PLOS One has bought into discredited arguments about patient consent forms not allowing sharing of anonymized data. PLOS One is no longer at the vanguard of open science through routine data sharing.

Better days: When PLOS Blogs honored my post about fatal flaws in the PACE chronic fatigue syndrome follow-up study (2015)

The back story on my receiving this honor was that PLOS Blogs only days before had shut down the blog site because of complaints from someone associated with the PACE trial. I was asked to resign. I refused. PLOS Blogs relented when I said it would be a publicity disaster for PLOS Blogs.

mind the brain logoThe back story on my receiving this honor was that PLOS Blogs only days before had shut down the blog site because of complaints from someone associated with the PACE trial. I was asked to resign. I refused. PLOS Blogs relented when I said it would be a publicity disaster for PLOS Blogs.

screen shot 11th most accessedA Facebook memory of what I was posting two years ago reminded me of better days when PLOS Blogs honored my post about the PACE trial.

Your Top 15 in ’15: Most popular on PLOS BLOGS Network

I was included in a list of the most popular blog posts in a network that received over 2.3 million visitors reading more than 600 new posts. [It is curious that the sixth and seventh most popular posts were omitted from this list, but that’s another story]

I was mentioned for number 11:

11) Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study Mind the Brain 10/29/15

Investigating and sharing potential errors in scientific methods and findings, particularly involving psychological research, is the primary reason Clinical Health Psychologist (and PLOS ONE AE) Jim Coyne blogs on Mind the Brain and elsewhere. This closely followed post is one such example.

Earlier decisions by the investigator group preclude valid long-term follow-up evaluation of CBT for chronic fatigue syndrome (CFS). At the outset, let me say that I’m skeptical whether we can hold the PACE investigators responsible… Read more

The back story was that only days before, I had gotten complaints from readers of Mind the Brain who found they were blocked from leaving comments at my blog site. I checked and found that I couldn’t even access the blog as an author.

I immediately emailed Victoria Costello and asked her what it happened. We agreed to talk by telephone, even though it was already late night where I was in Philadelphia. She was in the San Francisco PLOS office.

In the telephone conversation,  I was reminded me that there were some topics about which was not supposed to blog. Senior management at PLOS found me in violation of that prohibition and wanted me to stop blogging.

As is often the case with communication with the senior management of PLOS, no specifics had been given.  There was no formal notice or disclosure about what topics I couldn’t blog or who had complained. And there had been no warning when my access to the blog site was cut. Anything that I might say publicly could be met with a plausible denial.

I reminded Victoria that I had never received any formal specification about what I could blog nor from whom the complaint hand come. There had been a vague communication from her about not blogging about certain topics. I knew that complaints from either Gabrielle Oettingen or her family members had led to request the blog about the flaws in her book,  Rethinking Positive Thinking . That was easy to do because I was not planning another post about that dreadful self-help book.  Any other prohibition was left so vague that had no idea that I couldn’t blog about the PACE trial. I had known that the authors of the British Psychological Society’s Understanding Psychosis were quite upset with what I had said in heavily accessed blog posts. Maybe that was the source of the other prohibition, but no one made that clear. And I wasn’t sure I wanted to honor it, anyway.

I pressed Victoria Costello for details. She said an editor had complained. When I asked if it was Richard Horton, she paused and mumbled something that I took as an affirmative. Victoria then suggested that  it would be best for the blog network and myself if we had a mutually agreed-upon parting of ways. I told her that I would probably publicly comment that the breakup was not mutual and it would be a publicity disaster for the blog.

igagged_jpg-scaled500Why I was even blogging for PLOS Blogs? Victoria Costello had recruited me over after I expressed discontent with the censorship that I was receiving at Psychology Today. The PT editors there had complained that some of my blogging about antidepressants might discourage ads from pharmaceutical companies for which they depended for revenue. The editors had insisted on  the right to approve my posts before I uploaded them. In inviting me to PLOS Blogs, Victoria told me that she too was a refugee from blogging at Psychology Today.  I wouldn’t have to worry about restrictions on what I could say at Mind the Brain, beyond avoiding libel.

I ended the conversation accepting the prohibition about blogging about the PACE trial. This is was despite disagreeing with the rationale that it would be a conflict of interest for me to blog about it after requesting the data from the PLOS One paper.

Since then, I repeatedly requested that the PLOS management acknowledge the prohibition on my blogging or at least put it in writing. My request was met with repeated refusals from Managing Editor Iratxe Puebla, who always cited my conflict of interest.

In early 2017, I began publicly tweeting about the issue, stimulating some curiosity others about whether there was a prohibition. InJuly 2017, the entire Mind the Brain site, not just my blog, was shut.

In early 2018, I will provide more backstory on that shutdown and dispute what was said in the blog post below. And more about the collusion between PLOS One senior management and the PACE investigators in the data not being available 2 years after I requested it.

Message for Mind the Brain readers from PLOSBLOGS

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This strange thumbnail is the default for when no preferred image is provided. It could indicate the haste with which this blog was posted.

Posted July 31, 2017 by Victoria Costello in Uncategorized

After five years and over a hundred posts, PLOSBLOGS is retiring its psychology blog, Mind the Brain, from our PLOS-hosted blog network. By mutual agreement with the primary Mind the Brain blogger, James Coyne, Professor Coyne will retain the name of this blog and will take his archive of posts for reuse on his independent website, http://www.coyneoftherealm.com.

According to PLOSBLOGS’ policy for all our retired (inactive) blogs, any and all original posts published on Mind the Brain will retain their PLOS web addresses as intact urls, so links made previously from other sites will not be broken. In addition, PLOS will supply the archive of his posts directly to Prof Coyne so that he may repost them anywhere he may wish.

PLOS honors James Coyne’s voice as an important one in peer-to-peer scientific criticism. As discussed with Professor Coyne in recent days, after careful consideration PLOSBLOGS has concluded that it does not have the staff resources required to vet the sources, claims and tone contained in his posts, to assure they are aligned with our PLOSBLOGS Community Guidelines. This has lead us to the conclusion that Professor Coyne and his content would be better served on his own independent blog platform. We wish James Coyne the best with his future blogging.

—Victoria Costello, Senior Editor, PLOSBLOGS & Communities

Bollocks!