# Advocacy by nonprofit scientific institutions needs to be evidence-based: a case study

François Gonon, Henri Gouraud, André Gillibert, Bruno Falissard, Lisa

Cosgrove, Kasper P. Kepp, Ioana A Cristea, Florian Naudet

► To cite this version:

François Gonon, Henri Gouraud, André Gillibert, Bruno Falissard, Lisa Cosgrove, et al. Advocacy by nonprofit scientific institutions needs to be evidence-based: a case study. SSM - Mental Health, 2025, 7, pp.100464. 10.1016/j.ssmmh.2025.100464. hal-05166739

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Submitted on 11 Oct 2025

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# Advocacy by nonprofit scientific institutions needs to be evidence-based: a case study

François Gonon<sup>a, ID</sup>, Henri Gouraud<sup>b, ID</sup>, André Gillibert<sup>c, ID</sup>, Bruno Falissard<sup>d, ID</sup>,
Lisa Cosgrove<sup>e, ID</sup>, Kasper P. Kepp<sup>f, ID</sup>, Ioana A. Cristea<sup>g, ID</sup>, Florian Naudet<sup>h,i,* ID</sup>

## ARTICLE INFO

Handling Editor: Dr A C Tsai

### Keywords:

Advocacy

Nonprofit scientific institution

Mental health

Health policy

Data use

Reporting

Evidence-based decision-making

## ABSTRACT

Scientific institutions, including universities and research centers, occasionally engage in advocacy to gain financial support. However, this can be problematic if they selectively present scientific evidence. We describe a case involving a French semi-public foundation dedicated to clinical research on four adult psychiatric disorders: autism without intellectual disability, treatment-resistant depression, schizophrenia, and bipolar disorder. The foundation has claimed that an initial assessment at any of its Expert Centers led to a 50 % reduction in hospitalization days. We analyzed communication directed at the public in the French press, advocacy efforts towards members of the French Parliament (MFPs), evidence supporting this claim within those activities, and MFPs' initiatives that addressed the foundation's request. However, the reduction in hospitalization originated from a single study of bipolar disorder patients, which lacked a control group and had other methodological flaws. No scientific publications supported similar claims for the other three disorders. On May 2, 2024, 70 members of the French Parliament introduced a bill aimed at integrating these Expert Centers into the healthcare system. Justifications for the bill explicitly cited the 50 % reduction in hospitalization for all four conditions. This case highlights the need for policy makers and journalists to verify the robustness of scientific claims before these become policy. It also emphasizes the responsibility of scientists and journal editors to recognize and mitigate spin in research studies and opinion articles and to develop tools that help evaluate advocacy and lobbying claims in scientific contexts.

## 1. Introduction

Public and nonprofit scientific institutions, such as universities, research centers and semi-public foundations have a long history of trying to garner financial support from governmental agencies. Such organizations do so by persuading politicians of the importance of their work. Indeed, because public funding is critical to academic research

and a limited resource, scientists and their institutions often advocate by petitioning the public and decision makers (Fernandez Lynch et al., 2020; Willson, 2020). In this competitive new situation, academic institutions have spent considerable resources to build up their communication departments with the goal of attracting media attention, hoping this will facilitate financial support (Peters, 2012).

Little is known about the direct advocacy activities of representatives

<footnote><sup>a</sup> Institute of Neurodegenerative Diseases, University of Bordeaux, CNRS UMR 5293, Bordeaux, France</footnote>

<footnote><sup>b</sup> Université Claude Bernard Lyon 1, Hospices Civils de Lyon, France</footnote>

<footnote><sup>c</sup> Department of Biostatistics, CHU Rouen, Rouen, France</footnote>

<footnote><sup>d</sup> Centre de Recherche sur L'épidémiologie de La Santé et des Populations, Université de Paris-Saclay, Villejuif, France</footnote>

<footnote><sup>e</sup> Counseling and School Psychology, University of Massachusetts Boston, Boston, MA, USA</footnote>

<footnote><sup>f</sup> Epistudia, Bern, Switzerland</footnote>

<footnote><sup>g</sup> Department of General Psychology, University of Padova, Italy</footnote>

<footnote><sup>h</sup> University Rennes, CHU Rennes, Inserm, EHESP, Irset (Institut de recherche en santé, environnement et travail) - UMR_S 1085, Centre d'investigation clinique de Rennes (CIC1414), Rennes, France</footnote>

<footnote><sup>i</sup> Institut Universitaire de France (IUF), Paris, France</footnote>

<footnote>* Corresponding author. Rennes University, CHU Rennes, Inserm, CIC 1414 (Centre d'Investigation Clinique de Rennes), 35000 Rennes, France.
*E-mail addresses:* francois.gonon@u-bordeaux.fr (F. Gonon), gouraudh@gmail.com (H. Gouraud), Andre.Gillibert@chu-rouen.fr (A. Gillibert), bruno.falissard@gmail.com (B. Falissard), lisa.cosgrove@umb.edu (L. Cosgrove), kasperplaneta@gmail.com (K.P. Kepp), ioanaalina.cristea@unipd.it (I.A. Cristea), floriannaudet@gmail.com (F. Naudet).</footnote>
of scientific institutions towards politicians, including parliamentary members. In relation to these activities, the distinction between advocacy and lobbying can be ambiguous. While lobbying is often linked to commercial entities, non-profit organizations have adopted numerous practices from the corporate sector, including industrial partnerships, leading to an overlap between the two concepts. In certain jurisdictions, the practice of academic professionals presenting their views to political figures may be considered a form of lobbying (Fernandez Lynch et al., 2020); however, this classification does not apply universally.

In France, lobbying activities are defined by the French law (Loi relative à la transparence, à la lutte contre la corruption et à la modernisation de la vie économique, 2016) as interactions between representatives of interest groups and public officials, including parliament members, to influence the public decision-making process, including legislative reforms. Interest groups must report their lobbying activity to the Haute Autorité pour la Transparence de la Vie Publique (HATVP) in a dedicated register (Répertoire des représentants d’intérêts) (Bauer et al., 2018). Advocacy by nonprofit institutions differs from formal lobbying in at least two important ways: First, according to the French law, interest groups are private or public institutions that engage in commercial activities, while nonprofit scientific institutions typically do not engage in such activities. Secondly, French law defines representatives of interest groups as individuals whose primary activity is lobbying, which is likely not applicable to most professionals involved in nonprofit scientific institutions.

The advocacy activities of nonprofit scientific institutions share similarities to those of patient advocacy groups, which have been studied particularly to assess the role of conflicts of interest. For example, advocacy by patient groups has greatly expanded since the 1990s (Best, 2012). Patient groups demand funding for research on specific diseases and disorders whose patients they represent. Therefore, they compete to attract public and political attention. This advocacy occurs via the media (Armstrong et al., 2006) and is often effective: advocacy expenditure for a condition has been found to be positively correlated with an increase in research funding (Best, 2012; Hegde and Sampat, 2015; Reardon, 2014). Diseases affecting primarily women and minorities tend to have lower level of advocacy and, therefore, receive less research funding (Best, 2012; Farooq et al., 2020).

Many patient advocacy groups are partly funded by the pharmaceutical industry (Rose, 2013) and the existence of private funding correlates with concentrating efforts on research questions aligned with the funders' interests (Marks, 2019). Similarly, a nonprofit scientific institution may use advocacy to successfully compete with other institutions, e.g. to gain support for its research agenda. Sponsorship and partnership with commercial entities might benefit nonprofit scientific institutions, but at the risk of potential biases in the research agenda, research design and decision to publish (Akl and Khamis, 2019; Fabbri et al., 2018; Marks, 2019). Finally, although nonprofit scientific institutions are not formally engaged in commercial activities, they may facilitate start-ups built to commercially exploit academic research (Calcagnini et al., 2016).

Advocacy per se is not inherently problematic. For example, the AllTrials campaign (https://www.alltrials.net/supporters/organisation s/) illustrates how scientific organizations can effectively advocate for greater clinical trial transparency. Advocacy by nonprofit scientific institutions is appropriate as long as it follows the law (Fernandez Lynch et al., 2020; Willson, 2020), and is based on sound scientific evidence. However, advocacy could be problematic if such efforts rely on the selective presentation and misinterpretation of scientific evidence. Previous academic case studies related to Alzheimer's disease (Kepp et al., 2025), nutrition (Serodio et al., 2020), and opiate prescription (Van Zee, 2009), showed that advocacy and lobbying activities engaged in these cases were based on biased and misinterpreted scientific evidence. More broadly, biases—such as cognitive biases and the use of biased evidence—have been documented as source of errors in policy decision-making (Schippers et al., 2025). However, to our knowledge,

no previous study examined in detail the scientific validity of the arguments put forward by a nonprofit scientific institution when petitioning politicians.

Distortion of scientific evidence in the media and in official reports is facilitated by the fact that many biomedical publications over-estimate benefits and under-report negative results, such as biases and uncertainties in efficacy estimates and side effects. Accordingly, various questionable reporting practices and “spin” have been described and quantified (Boutron and Ravaud, 2018; Chiu et al., 2017). Such “spin” is frequent in the biomedical literature (Chiu et al., 2017). For example, among 200 studies about ovarian cancer biomarkers, 140 contained at least one form of spin, thus exaggerating the performance of the biomarker (Ghannad et al., 2019). Unfortunately, these exaggerations are reproduced in press releases published by academic institutions (Woloshin et al., 2009) and, then, propagate into the media if journalists are not critical (Schwartz et al., 2012; Sumner et al., 2014). To address these problems, groups like the Lown Institute publish critical analyses of evidence and have developed a list of independent health experts (which includes some of the authors of this paper). Congruent with the aims of other researchers and organizations who are concerned about the impact of advocacy and lobbying on scientific integrity and evidence-based policy making, we provide a case study of problematic advocacy by a French semi-public scientific institution, FondaMental Foundation (FF).

## 1.1. The FF and its context

The FF was created in 2007 by the French Minister of Scientific Research to advance the knowledge concerning the diagnosis and treatment of the most frequent and difficult to treat psychiatric disorders. It receives funding from various public sources, as well as from pharmaceutical companies and from some major French industrial groups. According to its annual activity report, its annual operating income reached 9.3 M€ in 2023. Since 2007 the FF is led by the same general director a professor of psychiatry.

On October 2024, the FF had created 54 Expert Centers organized into four networks to provide an in-depth standardized clinical assessment of four adult disorders: autism without intellectual disability, treatment-resistant depression, schizophrenia and bipolar disorders (BD) (Laidi et al., 2023). These Centers exert their activities inside public university hospitals and with the support of their staff. Outpatients are referred to Expert Centers by their psychiatrist or family doctor. These centers do not accept emergency referrals or hospitalized patients. At the end of their first assessment by Expert Centers, patients receive a detailed evaluation report including recommendations for therapeutic interventions. This report is also transmitted to their referring physician, who is still in charge of their routine care and treatment. The scientific production of the FF is quantitatively significant: the FF leader, and her coworkers published more than 640 studies indexed by PubMed since 2007. Most of these studies are based on cohorts of patients assessed at least once by these Expert Centers. Here, aside from one study, we do not discuss the merits of this scientific production.

Two FF leaders published in 2018 a book in which they argue for reforming French psychiatry (Leboyer and Llorca, 2018). In particular, they recommend “generalizing the network of Expert Centers” (p. 359). In other words, this network should be extended to the whole of France and should be integrated into the healthcare system. To justify their recommendation, both authors emphasized that the therapeutic efficacy of Expert Centers has been scientifically proven: a first assessment in an Expert Center decreases by 50 % the number of hospitalization days (Leboyer and Llorca, 2018). In support of this claim the book cited a 2017 study co-authored by the FF leader (Henry et al., 2017). This claim is important for four reasons. First, the number of hospitalization days represents a factual index, thus limiting measurement errors. Second, it is crucial for a patient's quality of life because a psychiatric hospitalization often represents a traumatic experience, even when necessary
(Chung et al., 2017). Third, hospitalizations represent 80 % of psychiatric care expenses for the French national health insurance (Leboyer et al., 2022). Therefore, a 50 % decrease in hospitalization days is very attractive for policy makers. Fourth, it is the only quantitative index put forward by the FF in its communication targeting the public and members of the French Parliament (MFPs) to assert the therapeutic effectiveness of its Expert Centers. If this claim is scientifically flawed, the FF case might therefore represent a case of inappropriate political influence.

The FF case is noteworthy also because the rationale underpinning FF advocacy is in line with those motivating patient advocacy groups: competition for funding, partnership with industry and indirect commercial activities. First, the FF competes with other French foundations also dedicated to psychiatry research. Second, the FF built several partnerships with private companies. For example, in 2023 the FF became official partner of Korian, a company that owns 34 private psychiatric hospitals in France (Desplats, 2023). According to this partnership, the FF shares with Korian the clinical data of the patients assessed in Expert Centers. And third, the FF incubated several start-ups. For example, a professor of psychiatry and leader of an Expert Center created the start-up Psykonos aimed at developing a blood test for BD diagnosis, based on his previous publication on cytokines measured in a cohort of BD patients assessed in Expert Centers (Martinuzzi et al., 2021). Therefore, the FF should be considered as a nonprofit scientific institution that exerts indirect commercial activities. However, the thorough investigation of the links between the FF and private companies is outside the scope of the present study.

In this paper, we describe how the FF's advocacy efforts persuaded the public and politicians to consider funding the Expert Center model. Through the documents we collected, we investigate three research questions. First, do they mention the main FF request: to extend the Expert Center network and to integrate it into the healthcare system? Second, do they mention the claim that the therapeutic efficacy of Expert Centers has been proven by studies showing a 50 % reduction in hospitalization days after a first assessment in Expert Centers? And third, is this claim supported by sound scientific evidence?

## 2. Methods

### 2.1. FF communication towards the general public in the French press

To document the advocacy activities that the FF engaged in, we first explored its communication towards the public. We used the Europresse database (https://www.europresse.com), which extensively stores all French media documents since the early 2000s, and we searched those mentioning the key expression: "fondation fondamental". The search was performed on November 1st 2024 on the whole Europresse research domain "France" that incorporate 946 French media, including almost all French newspapers and magazines of the general press and many specialized publications (e.g. *Le Quotidien du Médecin*). The Europresse database was searched from 2007 (year of FF creation) to November 1st 2024. All media documents were eligible regardless of their message (e. g. supporting or questioning the FF claim). We retrieved in full all documents mentioning the key word "hospitalization*" in the text. These pdf documents were independently read by two of us (FG and FN) to select those claiming that a first assessment in Expert Centers results in a 50 % decrease in hospitalization days. Additional details and a flow chart (Fig. S1) are given in supplementary file.

### 2.2. FF advocacy activities towards MFPs

We checked on April 22, 2025 if the FF and its director were listed in the HATVP register since its creation on July 1st 2017. Although it does not seem to be required by the French law, some nonprofit institutions (e.g. Association France Alzheimer) reported their advocacy activities in the HATVP register, but the FF did not. Therefore, in order to find

evidence of direct FF advocacy activities explicitly targeting MFPs and mentioning the Expert Centers, we searched the FF website (https://www.fondation-fondamental.org) with the key words: "député* OR sénateur OR sénatrice". The whole FF website was searched from inception to February 20th, 2025. Documents that were thus extracted from the FF website, mentioned several forms of advocacy activities (e.g. open letter to Health Minister, parliamentary symposium). To further document these activities, we searched Google on February 20th, 2025 using key words found in the relevant FF documents ("foundation FondaMental", "député", "centers expert", "Sénat", "Assemblée Nationale" and the name of the MFPs already mentioned in the FF documents). We also searched on February 20th, 2025 the Senate website with the name of the FF leader as keyword. All retrieved documents were examined and those that did not mention an official hearing of the FF leader, were excluded. Finally, on February 20th, 2025 we used Google to explore the website of the National Assembly by using the following request: "assemblée nationale" followed by the name of the FF leader. Among the first 130 items of the Google search, we only examined those provided by the National Assembly website. Then we excluded items giving access to 1) non accessible video, 2) bills and parliamentary debates, and 3) duplicates. We also searched the Senate website and the National Assembly website on February 21st, 2025 with the same procedure, but with the name of another prominent FF member, who co-authored the book published by the FF leader (Leboyer and Llorca, 2018). The documents retrieved from these searches were collected in full. Each advocacy activity was further considered for analysis if Expert Centers were mentioned at least once in the related document.

We read all collected documents to record the type, location and date of each advocacy activity and we collected the number and name of FF members and of MFPs involved. Advocacy activities were identified by their date of occurrence, and the corresponding web documents were identified by the corresponding date followed by a letter. We tested whether these documents mentioned the main FF request, i.e. the inclusion of the Expert Centers in the healthcare system. Finally, we searched these web documents to determine whether the claim about the 50 % reduction in hospitalization days was mentioned. To assert that the FF request and the questionable claim were actually mentioned, we extracted significant sentences from these web documents.

### 2.3. Evaluation of the scientific evidence

To analyze the scientific evidence supporting the claim about a 50 % reduction in the number of hospitalization days, we adopted a constructivist approach, engaging in a collaborative discussion among the authors (FG, FN, AG). This process involved critically evaluating the evidence across key aspects of the PICOS framework—namely, the population of patients included, the intervention used, the comparator employed, the outcomes measured, and the study design (Costantino et al., 2015). Through this dialogue, we were able to assess the strengths and limitations of the evidence from multiple perspectives, ensuring a comprehensive and nuanced interpretation.

### 2.4. MFPs' initiatives that took up the FF request

On May 2nd, 2024, 70 MFPs have introduced a bill (Proposition de loi visant à prendre des mesures d'urgence pour la santé mentale, 2024) aimed at expanding the Expert Center model and at increasing its political support. This bill was preceded on February 27th 2024, by a written question to the government (Mournet, 2024). Both official documents were read by one of us (FG) to test whether they put forward the main FF request, i.e. the integration of the Expert Center model in the healthcare system, and the claim about the 50 % reduction in hospitalization days.
# 3. Results

## 3.1. FF communication towards the general public in the French press

According to the Europresse database, 663 documents mentioning the FF were published by French media from 2007 to November 1st 2024. Among them, 65 also mentioned the key word "hospitalization*". Among these 65 documents, two of us (FG and FN) independently identified and analyzed five independent press articles (flow chart in Fig. S1, supplementary file) expressing the claim that "12 months after an initial check-up at the Expert Center, the health of their patients has improved significantly, with hospital admissions down by half" (Table 1). There was no disagreement between both coders concerning the identification and analysis of these five press articles. In the article published by *L'Express* on January 25th, 2024, this claim is expressed in a quotation of the FF leader. Moreover, she also authored the opinion column published by *Le Figaro* on February 13th, 2024. Finally, according to the independent analysis of two authors (FG and FN), none of these five press articles gave voice to a balanced view questioning the soundness of the scientific evidence behind this claim.

## 3.2. FF advocacy activities towards MFPs

Our search on the websites of the FF, the Senate and the National Assembly retrieved 33 relevant documents that reported on 16 advocacy activities (Fig. 1). Four activities were excluded because they did not mention the Expert Centers (three hearings of the FF leader and one television broadcast about administrative issues related to psychiatry and about the effect of COVID-19 on mental health). The 12 remaining advocacy activities mentioned Expert Centers, and involved FF members and MFPs between 2008 and 2024 (Table 2, Fig. 1). These activities were described in 29 relevant web documents, for which URLs are given in supplementary file (Table S1). Among these 12 activities, two were written documents and ten were in-person meetings. The first written document was an open letter signed by the FF leader and by three

<table><caption>**Table 1**
Media documents claiming that a first assessment in Expert Centers results in a 50 % decrease in re-hospitalization.</caption><thead><tr><th>Date</th><th>Type of document</th><th>Translated quote</th><th>Conflicts of interests of signatories</th></tr></thead><tbody><tr><td>2017-10-10</td><td><i>Le Quotidien du Médecin</i> (website)</td><td>The number of hospitalization days per year fell from an average of 17 days (one year before inclusion) to 7.5 days (55 %) after a two-year follow-up.</td><td>The author of this press article is not mentioned, but the article explicitly covers Henry-2017.</td></tr><tr><td>2017-11-20</td><td><i>Le Quotidien du Médecin</i></td><td>reduction in the number of days spent in hospital (from 17 days to 7.5 days, i.e. -55 %).</td><td>The author of this press article is not mentioned, but the article explicitly covers Henry-2017.</td></tr><tr><td>2018-03-29</td><td>General press: <i>La Montagne</i></td><td>With hindsight, it appears that the expert center principle is already helping to reduce hospital admissions and the time to obtain a diagnosis.</td><td>The author of the press article is not mentioned.</td></tr><tr><td>2024-01-25</td><td>General press: <i>L'Express</i></td><td>"we have shown that re-hospitalization of patients is reduced by half, twelve months after a check-up," explains Marion Leboyer</td><td>The interviewee is a co-author of Henry-2017. She leads the FF</td></tr><tr><td>2024-02-13</td><td>General press: <i>Le Figaro</i> (website)</td><td>According to the carried-out studies, 12 months after an initial check-up at the Expert Center, the health of their patients has improved significantly, with hospital admissions down by half,</td><td>The author of the press article is a co-author of Henry-2017. She leads the FF.</td></tr></tbody></table>

leaders of patient advocacy groups. This letter has been sent on November 7th 2023 to the Health Minister and all MFPs (access given in Table S1). The second was an opinion column published on February 13th, 2024, by *Le Figaro* (access given in Table S1). It was signed by the FF leader, by 24 other FF members and 48 MFPs (Table 2).

The ten other advocacy activities consisted of official in-person meetings (Table 2). Since 2008 to 2019 the FF leader was heard by six distinct parliamentary committees and these hearings were recorded in official reports from either the Senate or the National Assembly. We found no evidence that another FF member would have been heard about Expert Centers by an official parliamentary committee. In 2015 the FF organized a conference in the presence of one MFP, where several talks were given by FF members. On October 2018 and May 2024, the FF and one MFP organized a symposium inside the National Assembly. Finally, on February 28, 2024, four FF members and one MFP arranged a visit of an Expert Center for five other MFPs.

According to the documents reporting on these advocacy activities, FF advocates requested to expand Expert Centers to the entire territory and to integrate them in the healthcare system. For example, in her hearing by French senators on February 1st, 2017, the FF leader said: "Expert Centers must evolve from an experimental status to a real public health system." The sentences that document this FF request are given in French language in Table S2 (see supplementary file) and their English translation are given in Table 3. These sentences explicitly show that this FF request was put forward during nine of the 12 advocacy activities (Tables 2 and 3). Concerning the conference held by the FF in 2015, and the 2024 parliamentary symposium, we were able to collect their program but not the text of the talks. The title of the talks implicitly suggested that the FF request has also been put forward during both conferences (Tables 2 and 3).

Among the 12 advocacy activities, five explicitly mentioned the claim about 50 % reduction in hospitalization days (Table 2), as asserted by the sentences mentioning this claim, which have been we extracted from the corresponding FF documents (Table 4). These sentences are given in French language in Table S3 (see supplementary file) and in English in Table 4. In particular, the open letter to the Health Minister and the opinion column published by *Le Figaro* explicitly mentioned this claim (Tables 2 and 4). In the open letter this reduction is said to be "a key data" (Table 4). In the opinion column the claim is said to be based on several studies (Table 4). However, both documents did not cite any scientific studies in support of the claim.

Both parliamentary hearings of the FF leader that occurred in 2017 and 2019, explicitly stated that there was a 50 % reduction in hospitalization days after a first assessment in Expert Centers (Table 4). The announcement of the 2018 parliamentary symposium mentioned that its program was in the continuation of a book written by the FF leader and her colleague (Leboyer and Llorca, 2018). This book cited a study (Henry et al., 2017), which is said to demonstrate that BD patients assessed in Expert Centers greatly improved: "This study also shows a more than 50 % decrease in patients' hospitalization recourse (p. 156)." Therefore, it is likely that this quantitative claim about hospitalization reduction has also been put forward during the 2018 parliamentary symposium (Tables 2 and 4). The FF press release that reported on the 2024 visit (Leboyer, 2024), again claimed that there was a 50 % reduction in hospitalization days (Tables 2 and 4). Finally, concerning the parliamentary symposium held on May 22nd, 2024, we had only access to brief documents that did not mention this claim.

It is of note that the FF leader participated in all 12 activities. However, six other FF members also played a significant role: they took part to two to four of these activities (Table 5). These six FF members were close coworkers of the FF leader. Indeed, each of them co-authored with the FF leader numerous publications referenced by PubMed (range number: 55 to 241). Moreover, one of them, a psychiatrist who leads an Expert Center, was appointed on May 3rd 2019 as Ministerial Delegate in charge of mental health and psychiatry to assist the Health Minister. More generally, among the 29 distinct FF members taking part to at least
<figure><img src="image_2.png" /><figcaption>**Fig. 1.** Flow chart of the selection of the FF advocacy activities that mentioned the Expert Centers. Four advocacy activities, as well as their corresponding documents, were excluded because they did not mention Expert Centers. NA: National Assembly.</figcaption></figure>

<table><caption>**Table 2**

Advocacy activities exerted by FF members towards Parliament members.</caption><thead><tr><th>Date</th><th>FF members</th><th>MFPs</th><th>activity</th><th>location</th><th>Request</th><th>Hospi</th></tr></thead><tbody><tr><td>2008-12-17</td><td>FF leader</td><td>5 senators</td><td>hearing</td><td>French Senate</td><td>explicit</td><td>no</td></tr><tr><td>2012-01-17</td><td>FF leader</td><td>3 MFPs</td><td>hearing</td><td>National Assembly</td><td>no</td><td>no</td></tr><tr><td>2013-02-07</td><td>FF leader</td><td>One MFP</td><td>hearing</td><td>French Senate</td><td>explicit</td><td>no</td></tr><tr><td>2015-06-11</td><td>FF leader and 6 FF memb.</td><td>One MFP</td><td>FF conference</td><td>Ministry of Education and Scientific Research</td><td>implicit</td><td>no</td></tr><tr><td>2017-02-01</td><td>FF leader</td><td>3 senators</td><td>hearing</td><td>French Senate</td><td>explicit</td><td>yes</td></tr><tr><td>2018-02-01</td><td>FF leader</td><td>2 MFPs</td><td>hearing</td><td>National Assembly</td><td>explicit</td><td>no</td></tr><tr><td>2018-10-04</td><td>FF leader and one FF memb.</td><td>Two MFPs</td><td>parliamentary symposium</td><td>National Assembly</td><td>explicit</td><td>likely</td></tr><tr><td>2019-06-11</td><td>FF leader</td><td>3 MFPs</td><td>hearing</td><td>National Assembly</td><td>explicit</td><td>yes</td></tr><tr><td>2023-11-07</td><td>FF leader</td><td></td><td>Open letter</td><td>Sent to Health Minister and MFPs</td><td>explicit</td><td>yes</td></tr><tr><td>2024-02-13</td><td>FF leader and 24 FF memb.</td><td>48 MFPs</td><td>Opinion column cosigned by FF memb. And MFPs</td><td>Le Figaro<br>Published on February 13</td><td>explicit</td><td>yes</td></tr><tr><td>2024-02-28</td><td>FF leader and 3 FF memb.</td><td>6 MFPs</td><td>Visit of an Expert Center</td><td>Hospital Albert-Chenevier, Créteil</td><td>explicit</td><td>yes</td></tr><tr><td>2024-05-22</td><td>FF leader and 2 FF memb.</td><td>16 MFPs</td><td>parliamentary symposium</td><td>National Assembly</td><td>implicit</td><td>no</td></tr></tbody></table>

MFPs: members of the Senate or National Assembly. Request: indicates whether the documents associated with each advocacy activity explicitly mentioned the main FF request, i.e. the inclusion of the Expert Centers in the standard care path. Hospi: indicates whether the claim about a 50 % reduction in hospitalization days was mentioned in the available corresponding documents.

one advocacy activity, 22 were leading one of the 54 Expert Centers in 2024, according to the FF website (see URL in supplementary file).

Similarly, among the 64 MFPs, who took part to these 12 activities, 18 were especially active: they participated in two to five activities (Table 5). Among them, one senator sat on the board of FF directors from 2011 to 2015, heard the FF leader in 2017 and gave a talk at the parliamentary symposium in 2018 (Table 2). Another MFP exerted a prominent role in 2024. He co-organized the visit of an Expert Center and the parliamentary symposium held in May 2024 (Table 2).

### 3.3. The scientific evidence put forward by the FF

The FF repeatedly claimed in its communication to the public and in its advocacy activities that the therapeutic efficacy of its Expert Centers is scientifically assessed by a 50 % reduction in hospitalization days (Tables 1, 2 and 4). However, among the media and web documents describing these activities, only one supported this claim by citing scientific publications. This document was a press release published on February 28, 2024 on the FF website and signed by the FF leader (Leboyer, 2024). It reported the visit of six MFPs to an Expert Center (Table 2). This press release emphasized the therapeutic efficacy of all four Expert Center networks: “Nowadays, the FF coordinates 53 Expert
<caption>**Table 3**</caption>

Excerpts from documents associated with the 11 advocacy activities showing the main request of the FF advocacy.

<table><caption>**Table 3 (continued)**</caption><thead><tr><th>Date document</th><th>Request of the FF advocacy according to documents listed in Table S1</th></tr></thead><tbody><tr><td>2008-12-17<br>A</td><td><strong>Official report of the hearing of the FF leader</strong><br>The FondaMental foundation is campaigning for the establishment of expert centers in psychiatry, which will be able to provide early diagnosis, implement psycho-education, etc. Thirty-two research teams are currently working around the expert centers. Their creation has even become a European project and it is necessary that they be established as quickly as possible.</td></tr><tr><td>2013-02-7<br>A</td><td><strong>The FF leader (audio recording of the hearing at 3h 48')</strong><br>"This organization into expert centers ... It works perfectly well ...<br>We are asking that it be developed and funded since, apart from the bipolar centers, it is still not funded."</td></tr><tr><td>2015-06-11<br>A and B</td><td><strong>Titles of symposium talks:</strong><br>Expert Centers: a dynamic structuring of diagnostic and research activities. Expert Centers, integration into the territorial network in Ile de France.<br>Expert Centers, a model for the future? R. Pamphile, FondaMental Foundation</td></tr><tr><td>2017-02-1<br>A</td><td><strong>Hearing of the FF leader by 3 senators:</strong><br>"This extension [of the Expert Center network] would make it possible to complete the current care offered by community psychiatry, which is a much more generalized psychiatry, and which uses this Expert Center system. Expert centers must evolve from an experimental status to a real public health system. Today, there is no coordination between the different systems, for example the resource centers are not coordinated."</td></tr><tr><td>2018-02-01<br>A</td><td><strong>Official report of the hearing of the FF leader</strong><br>Proposal No. 31: Strengthen the financial effort in favor of research into autism and neurodevelopmental disorders: rely as much as possible on existing resources to develop the new structures envisaged by the National Strategy, and as such ensure the transition of funding for expert centers.</td></tr><tr><td>2018-10-4<br>A</td><td><strong>Summary of the talk given by a prominent FF member:</strong><br>In many respects, the creation of a specialized level 3 in psychiatry (recourse level) appears to be a necessary and complementary development to primary care psychiatry. This is the model that the FondaMental Foundation has developed through the creation of the Expert Center model, which is based on significant coordinating work. ... It should be noted that, far from being unprecedented, such an evolution in the care system has already taken place in most medical disciplines (oncology, cardiology, neurology, etc.) with proven benefits in patient care. It remains to obtain recognition, support and implementation of this model in psychiatry.</td></tr><tr><td>2019-06-11<br>A</td><td><strong>Official report of the hearing of the FF leader by an MFP</strong><br>"Professor ... [the name of the FF leader] interviewed by the [parliamentary] committee, thus estimated that the "Expert Centers" set up by the FondaMental Foundation, which offer specialized medical expertise for several pathologies, had a positive impact ... Unfortunately, access to such specialized expertise remains very limited for patients due to the low number of these centers, and the delays in obtaining an appointment are increasingly long (more than two years of waiting for a first appointment in high-level autism expert centers in Ile-de-France for example). It is even threatened, since the coordination of these centers, funded by the Labex BioPsy ends in 2019."</td></tr><tr><td>2023-11-7<br>A</td><td><strong>Open letter to the Health Minister and all MFPs.</strong><br>"Despite these achievements, the Expert Center model remains experimental and unequally endowed in France: it is still not integrated into the healthcare system, nor is it deployed across the entire territory, nor for all pathologies. As the review of the PLFSS 2024 approaches and faced with the urgency of perpetuating and developing this model to finally provide worthy responses to these growing needs, we want to make our voice heard."</td></tr><tr><td>2024-02-13<br>A</td><td><strong>Opinion column in Le Figaro</strong><br>Title: Against the deleterious state of psychiatry in France, it is urgent to generalize access to care.<br>"Waiting times before having an appointment at one of the Expert Centers are too long today and constitute a real loss of opportunity for patients. While one in three people will experience an episode of mental illness in their lifetime, it is urgent to generalize access to Expert Centers to all French people who need it."</td></tr><tr><td>2024-02-28<br>A</td><td><strong>FF press release, title: Psychiatry and mental health: parliamentary members, institutions and users call for the generalization of Expert</strong></td></tr></tbody></table>

<table><caption>**Table 4**</caption><thead><tr><th>Date document</th><th>Request of the FF advocacy according to documents listed in Table S1</th></tr></thead><tbody><tr><td></td><td><strong>Centers.</strong><br>"While mental health is one of the major public health issues of this century and in order to meet the demands of patients, their loved ones, associations and health professionals, it is imperative to generalize access to Expert Centers to all French people, who need it. This development must first of all involve the stabilization and sustainability of funding allocated to the hospital centers, which host the 53 existing Expert Centers. Furthermore, to meet population needs and ensure the territorial coverage of the care offer, the FondaMental Foundation is calling for the deployment of 20 new Expert Centers. Objective: one Expert Center per pathology and per region."</td></tr><tr><td>2024-05-22<br>C</td><td><strong>Title of a symposium talk:</strong><br>Integrate a specialized recourse offer coordinated with community psychiatry.</td></tr></tbody></table>

Excerpts from documents associated with advocacy activities that mentioned the 50 % reduction in hospitalization days.

<table><thead><tr><th>Date Document</th><th></th></tr></thead><tbody><tr><td>2017-02-1<br>A</td><td><strong>Hearing of the FF leader by 3 senators:</strong><br>"We have provided the first medico-economic results of the impact of the implementation of expert centers. We showed that two years after a first visit to an expert center, there is a 50 % reduction in the number of hospitalization days."</td></tr><tr><td>2018-10-4<br>A</td><td><strong>Summary of the talk by a prominent FF member:</strong><br>"The first impact studies of this system demonstrated better compliance with treatments, greater compliance with international recommendations, an improvement in symptomatology and a reduction in the duration and frequency of hospitalizations."</td></tr><tr><td>2019-09-18<br>A</td><td><strong>Official report of the hearing of the FF leader by three MFPs</strong><br>"According to data provided by ... [the name of the FF leader], twelve months after an assessment in an expert center, hospitalization days are reduced by half for people with bipolar disorders."</td></tr><tr><td>2023-11-7<br>A</td><td><strong>Open letter to the Health Minister and all MFPs.</strong><br>"The 50 % reduction in re-hospitalizations 12 months after a visit to an expert center is a key data for us, families of users."</td></tr><tr><td>2024-02-13<br>A</td><td><strong>Opinion column in Le Figaro</strong><br>"According to carried out studies, twelve months after a first assessment performed at an Expert Center, the health of their patients has clearly improved: hospitalizations decreased by half."</td></tr><tr><td>2024-02-28<br>A</td><td><strong>FF press release:</strong><br>"Since 2010, these Centers have demonstrated their effectiveness. According to the studies carried out, 12 months after a first assessment performed in an Expert Center, a halving of re-hospitalizations is observed ... By halving re-hospitalizations one year after a first assessment, the Expert Centers model therefore allows a significant reduction in these [health] costs."</td></tr></tbody></table>

centers on the national territory, grouped into four networks: BD, treatment resistant depression, schizophrenia and autism without intellectual disability. Since 2010, these centers have proven their effectiveness. According to the studies carried out, 12 months after a first assessment carried out in an Expert Center, a halving of re-hospitalizations is observed" (p.1) (Leboyer, 2024). In support of this claim, the press release cited only one study providing data about hospitalization days before versus after a first assessment in an Expert Center. This study by Henry and co-authors, including the FF leader and the Ministerial Delegate, was only related to BD patients (Henry et al., 2017). We found no scientific publication supporting the view that a first assessment in Expert Centers affects the re-hospitalization of patients suffering from autism, treatment-resistant depression or schizophrenia. Even when only considering BD, the study by Henry and coworkers (Henry et al., 2017) appears to be the only one reporting on hospitalization days. In fact, it is the only study on this topic cited by a review article about BD published in 2022 by the FF leader and 20 others FF
<table><caption>**Table 5**
Distribution of members according to the number of “activities” they participated in.</caption><thead><tr><th>Number of advocacy activities</th><th>1</th><th>2</th><th>3</th><th>4</th><th>5</th><th>6</th><th>7</th><th>8</th><th>9</th><th>10</th><th>11</th><th>12</th></tr></thead><tbody><tr><th>Number of FF members</th><td>22</td><td>5</td><td>0</td><td>1</td><td>0</td><td>0</td><td>0</td><td>0</td><td>0</td><td>0</td><td>0</td><td>1</td></tr><tr><th>Number of MFPs</th><td>46</td><td>14</td><td>3</td><td>0</td><td>1</td><td>0</td><td>0</td><td>0</td><td>0</td><td>0</td><td>0</td><td>0</td></tr></tbody></table>

The numbers shown in the “FF members” and “MFPs” rows represent the number of individuals in each respective category who participated in the corresponding number of advocacy activities details in the columns. Note: the 2023 open letter was sent to all MFPs and this was not taken into account here.

members (Leboyer et al., 2022).

The media and web documents about the FF advocacy activities that were published in 2023 and 2024 mentioned that four psychiatric disorders are assessed by Expert Centers and claimed that a first assessment in Expert Centers reduces by half the number of hospitalization days (Tables 1 and 2). Therefore, these advocacy documents generalized the data from the study by Henry et al. about BD to all three other disorders without any scientific justification. Moreover, they claimed that this therapeutic effect is asserted by several studies (Table 1 and the press release cited above) while the study by Henry et al. is the only one investigating the effect of a first assessment on hospitalization days. Therefore, these advocacy documents misrepresent the scientific evidence. Moreover, the study by Henry et al. played a key role in the advocacy exerted by the FF.

### 3.4. Major limitations of the study by henry et al

Henry and colleagues studied a cohort of 984 BD patients who were assessed by an Expert Center (Henry et al., 2017). After this first assessment, they were reassessed at least once after one year and/or two years. For these 984 patients, the average number of hospitalizations during the year preceding this first assessment was 0.57 (see Table 2 in Henry et al.). During the year following this first assessment this number was only 0.34 and it further decreased to 0.24 during the second year of follow-up. For these three annual periods the average number of hospitalization days decreased from 16.8 before the first assessment to 14 and then 7.5 during the first and the second year after it (see Table 2 in Henry et al.). Therefore, there was an apparent 55 % reduction in hospitalization days, at least for the second year after the first assessment, and this conclusion is asserted by the authors in their abstract (Henry et al., 2017). However, there are weaknesses in the study's design and analysis that raise questions about the validity of their findings.

First, in the absence of a control group, the causal link between a first assessment in an Expert Center and a 50 % reduction in hospitalization days can hardly be inferred from these data, and an alternative interpretation, i.e. a regression to the mean, must be considered. A careful examination of the data suggests that this alternative interpretation is plausible. Indeed, for the 984 BD patients, the number of hospitalizations during the year preceding the assessment was on average 0.57 (see Table 2 in Henry et al.). In their Table 1 the authors reported that the whole illness duration before assessment was on average 17.9 years. They specified (p. 654) that the average number of hospitalizations during the lifespan was 2.6. Thus, before the first assessment, the average number of hospitalizations per year and per patient during the whole illness was equal to 0.145. Therefore, the average number of hospitalizations during the year before the assessment (0.57) is 3.9 times larger than on average during the entire duration of the illness until the first assessment in an Expert Center. The decrease in the number of hospitalizations after the first assessment could therefore result from a regression to the normal course of the illness after a temporary worsening, which might occur during the year preceding the first assessment. This temporary worsening seems substantial. Indeed, among their cohort of 984 patients, Henry and colleagues reported that only 266 (i.e. 27 %) were hospitalized at least once during the year preceding the first assessment. As the average number of hospitalizations indicated in their Table 2 is 0.57 for the entire cohort (984 BD patients), this suggests that the 266 patients, who were hospitalized at least once during the year

before the assessment, were effectively hospitalized about twice during that year. This suggests that the decision to refer some BD patients to an Expert Center might have been triggered by a temporary escalation of their illness. Moreover, the greater reduction in hospitalization days in the second year compared to the first contradicts a causal interpretation, as intervention effects typically diminish over time.

Second, Henry and colleagues reported that, among these 984 patients, an unspecified number did not complete follow-up (Henry et al., 2017). It is likely that the number of patients actually assessed at two years represented only a fraction of these 984 patients. Indeed, the same group of researchers reported in 2020 the results of a cohort of BD patients: the number of patients seen at two years (704) represented only 30 % of the 2351 patients seen at first assessment (Godin et al., 2020). Henry and colleagues used the multiple imputation method and inverse-probability-of-attrition weights (IPAW) to address missing data and selection bias due to patient drop-out. The data given in their Table 2 and mentioned above were obtained through this estimate of missing data. However, the validity of the multiple imputation method depends on several factors, including the percentage of drop-out patients and the randomness of the drop-out (Cummings, 2013). If patients seen at two years did not exhibit the same base-line characteristics as dropout patients, the multiple imputation method might be not valid. Raw data, in particular the number and base-line characteristics of patients' subgroups, could enable reader to estimate the validity of the multiple imputation method used in this study. Henry and colleagues mentioned that these raw data were given in supplementary data (see the end of the Methods section: “Results without multiple imputations and IPAW were also added in annexes”). These “annexes” cannot be found on the website of Bipolar Disorders. According to its Editorial Assistant, the authors never attached them. We emailed the corresponding author to request these annexes. She answered us that she did not have them and that we should ask the second author. The latter replied to our email that she could not find them in her files.

Third, and perhaps most important, the only way to prove a real therapeutic effect of the first assessment would have been to compare the treated patients with a suitable control group of BD patients. In the discussion Henry and colleagues acknowledged that this absence of a control group represents the main limitation of their study (Henry et al., 2017). Unfortunately, the authors did not mention this important limitation in the abstract (Henry et al., 2017). In conclusion, we found substantial discordances between the results and their interpretations. It is misleading to the public to represent this study as scientific evidence of the therapeutic efficacy of Expert Centers asserted by a 50 % reduction in hospitalization days.

### 3.5. MFPs' initiatives that took up the FF request

Evidence suggests that the FF advocacy targeting MFPs has been effective. First, on February 27, 2024, the MFP, who organized a visit in an Expert Center in February 2024, posed a written question to the government. In this text the FF request was put forward: “The aim would be to increase the implementation of these mental health Expert Centers. The MFP would like this model to find its place in the provision of care and to be integrated into the reform of the funding of psychiatry” (Mournet, 2024). In support of his proposal, this MFP wrote: “For example, regarding BD, mental health Expert Centers have enabled a 50 % reduction in hospitalization days.” On March 6th, 2024, the Health
Minister responded to MFP's question. He acknowledged that the network of Expert Centers has not yet been included in the care path although it should be. He added that, regarding mental health, he will work to reorganize the care system to include FF Expert Centers (Mournet, 2024).

Second, on May 2nd, 2024, 70 MFPs, introduced a bill (Proposition de loi visant à prendre des mesures d'urgence pour la santé mentale, 2024) aimed at including Expert Centers in the healthcare system and at increasing their public funding. The first clause of the fourth article of this draft law was: "Expert centers are specialized referral centers, linked to local professionals, integrated into care pathways, intended for improving the accuracy of diagnosis and the establishment of personalized therapeutic recommendations." The preamble of this bill mentioned that "twelve months after an assessment in an Expert Center, an improvement of the prognostic and a decrease by 50 % in the number of hospitalization days is observed." Beside the fact that the same arguments are given in recent FF documents and in the preamble of the bill, we also observed some similar wordings and language elements (Table 6). In particular we noted a cliché, which is quite informal in French language: "victim of its own success" (Table 6).

# 4. Discussion

## 4.1. Main findings

The target of the FF advocacy was asking the French government to integrate the Expert Center model in the healthcare system and to expand it to the entire territory (Table 3). The benefits from this request are still debated and beyond the scope of the current paper. Our focus here is the validity of the scientific evidence put forward by the FF to justify this request. Indeed, the FF advocacy highlighted the therapeutic effectiveness of Expert Centers, which was said to be asserted by a 50 % reduction in hospitalization days, although this claim was supported by questionable scientific evidence. The FF exerted this advocacy through its communication directed to the public and through advocacy activities targeting MFPs. Indeed, since 2007 the FF repeatedly communicated to the public through the French press. However, the claim about a 50 % hospitalization reduction appeared in a small minority of press articles mentioning the FF. In contrast, this claim was explicitly put forward in five out of the eight advocacy activities involving FF members and MFPs since Henry's publication in 2017. Because 29 FF members took part to these activities, including 22 who were leading an Expert Center in 2024, and because the FF explicitly sponsored these

<table><caption>**Table 6**
Language elements found in recent FF documents and in the preamble of the bill.</caption><thead><tr><th>Documents related to FF advocacy</th><th>Preamble of the draft law (2024-05-02)</th></tr></thead><tbody><tr><td>Ten years after their creation, these Centers are literally victim of their own success (opinion column Le Figaro, 2024-02-13)</td><td rowspan="2">Today Expert Centers are victim of their own success.</td></tr><tr><td>Victim of its own success the model must evolve. (FF press release, 2024-02-28)</td></tr><tr><td>Two years. This is the average time for a patient to get an appointment (opinion column Le Figaro, 2024-02-13)</td><td rowspan="2">The average time to get an appointment for an assessment can be up to two years.</td></tr><tr><td>Today, the waiting time to get an appointment in an Expert Center is too long. (FF press release, 2024-02-28)</td></tr><tr><td>Recourse system complementing the sectorial offer, specialized by pathology, graded and integrated inside the care pathway, the Expert Centers represent a specialized system which operate to reinforce conventional psychiatry. (FF press release, 2024-02-28)</td><td>This offer of a specialized recourse does not compete, but must be complementary, integrated and articulated with the community network.</td></tr></tbody></table>

activities, it appears that the FF advocacy was a collective endeavor. However, it should be noted that many psychiatrists affiliated with the FF did not take part in these activities.

The FF advocacy targeting MFPs seems to have been effective. The written question to the government put by an MFP and the bill introduced by 70 MFPs endorsed the FF request: integrating Expert Centers to the healthcare system. Moreover, both 2024 official documents justified this request with the same flawed scientific evidence put forward since 2017 in FF advocacy activities. Finally, similar wordings were observed in this bill and in previous FF documents. Altogether, these observations suggest that the FF advocacy may have played a role.

## 4.2. The FF advocacy within the French context

While there are potential benefits of the expert centers as discussed by the FF, the expected benefit of integrating Expert Centers into the mental health care system is still debated (Espi et al., 2023). Indeed, after assessment, Expert Centers typically refer patients back to their own psychiatrists with a series of recommendations regarding pharmacological therapies, as well as psychological and social interventions. Although Expert Centers can help manage complex clinical cases, they also cause frustrations when the suggested interventions, such as Cognitive Behavioral Therapy (CBT), are not accessible due to long waiting times or lack of available services (Dupays and Emmanuellli, 2020). Moreover, Expert Centers only receive, at most once per year, stabilized patients, who are not hospitalized or in crisis, while first-line professionals are in much closer contact with their patients. In other words, psychiatrists working in Expert Centers are specialists of one pathology, while first-line physicians are experts about every unique patient (Espi et al., 2023) and are also experts in multiple conditions. Although both types of expertise might ideally be complementary, the scientific prestige that is associated with Expert Centers, tends to undervalue the expertise of first-line professionals (Espi et al., 2023), and might undermine the trust they receive from the public. Altogether, in the absence of randomized controlled trials clearly demonstrating the therapeutic efficacy the four Expert Center networks, and considering the weaknesses of the published scientific evidence, advocacy efforts should be moderated.

Among the media documents mentioning the FF, many highlighted the studies published by scientists affiliated with the FF. Indeed, the main purpose of the FF seems to be to develop cohorts of psychiatric patients to collect and analyze health data in order to discover biomarkers and new treatments in personalized psychiatry. However, the return on investment for research in biological psychiatry is uncertain (Insel, 2022). Policy makers might be more inclined to increase the state support to Expert Centers when the FF claims that they can achieve a 50 % decrease in hospitalization days for multiple psychiatric disorders. Unfortunately, most MFPs, who were targeted by the FF advocacy were probably not familiar with the uncertainty inherent in a claim supported by a single scientific publication. Therefore, it is not surprising that these MFPs did not question the scientific evidence put forward by the FF.

## 4.3. Limitations

The *Europresse* database allowed us a systematic search of all press articles mentioning the 50 % reduction in hospitalization days. However, it only retrieved five press articles and this prompted us to look for evidence of direct advocacy activities. Unfortunately, because the FF did not report its advocacy activities in the HATVP register, this precluded a systematic search. Therefore, beside the 12 advocacy activities described in Tables 2 and it is likely that many others have escaped our scrutiny, in particular informal discussions between FF members and MFPs. It is of note, however, that these 12 activities were highly formal (e.g. official hearing by MFPs, symposium in conference room of the Senate). Therefore, they might reflect a faithful picture of the FF advocacy. Likewise, beside the written question to the Health Minister and
the bill introduced by 70 MFPs, it is likely that some MFPs advocated to the government for the Expert Center model by other means and actions that escaped our scrutiny. The introduction of the bill on May 2nd, 2024, might represent the official conclusion of this advocacy.

## 4.4. Concluding remarks

We are not aware of previous studies investigating the validity of the scientific arguments put forward by a nonprofit scientific institution in the course of its advocacy activities. Therefore, we don't know whether the FF case is an exceptional case of scientifically inappropriate political influence or it is a case of structural issue in science-policy interaction. Thus, our aim here is to invite other researchers to investigate the same issue. It's important to note that we cannot determine whether the FF advocacy based on the flawed study was intentional. FF members might have been influenced by a confirmation bias (Nickerson, 1998).

In the study published by Henry et al. we observed several discor- dances between the results and their interpretation. Therefore, this study illustrates several forms of questionable reporting practices “that distort the interpretation of the results and mislead readers so that re- sults are viewed in a more favorable light” (p. 1) (Chiu et al., 2017). Unfortunately, scientific journalists are not aware of these questionable practices and almost always take for granted all scientific findings published in peer-reviewed journals (Dumas-Mallet, 2019). Politicians do not seem more cautious than journalists when they put forward sci- entific evidence in parliamentary debates (Qadir and Syväterä, 2021).

Thus, it is not surprising that advocacy based on questionable sci- entific evidence is accepted by both politicians and journalists. There- fore, our case study illustrates the consequences that a single study might have when its main conclusion is not supported by the data. It is the ethical responsibility of individual scientists and of scientific in- stitutions to present scientific evidence accurately when advocating for political support. Our case study further emphasizes the need to improve standards in biomedical journals (Boutron and Ravaud, 2018).

## 4.5. Recommendations

In the light of the present case study, we make three recommenda- tions: First, scientists involved in advocacy concerning health policies should be aware that misrepresented scientific evidence might result in unwarranted hope among patients, disappointing health policies and ineffective public spendings. In the long run questionable advocacy might undermine the public confidence in science. We also recommend more careful use of guidelines for communicating scientific evidence in public, especially when relating to new treatment methods or interventions.

We recently developed such a guideline based on E-LU-CID-AT-E principles that take into account the evidence, the limitations and un- certainty, the competing interest declared, the acknowledged tradeoffs and the expertise (Kepp et al.). Table 7 illustrates an analysis of our case study on the basis of these principles. This guideline might help scien- tists to advocate more responsibly. It might also guide journalists and policy makers to ask advocates the right questions. Specifically, we recommend that data supporting new treatments and therapeutic in- terventions be reviewed by independent experts. These guidelines should be taught in schools of journalism and in training secessions dedicated to politicians, especially to those involved in social and health issues.

Second, we suggest a reform of the French law about the trans- parency of lobbying activities. Nonprofit academic institutions, which have strong partnerships with commercial companies and receive sub- stantial sponsorships, should be considered as indirectly exerting com- mercial activities and, thus, should declare their lobbying activities in the HATVP register. It is of note that the US Federal Lobbying Disclosure Act does not restrict the duty to disclose lobbying activities to in- stitutions that exert commercial activities (Fernandez Lynch et al.,

<table><caption>**Table 7**
ELUCIDATE principles analysis of the case study.</caption><thead><tr><td></td><td>Other communication</td><td>Scientific data</td></tr></thead><tbody><tr><td>Evidence</td><td>Press documents related to advocacy activities claimed that the therapeutic effectiveness of Expert Centers has been scientifically proven: a first assessment halves the number of hospitalization days. Most documents did not clarify that the published data are only about bipolar disorder.</td><td>Evidence comes from a single study (Henry et al., 2017) on patients with bipolar disorder that observed a 50% decrease in hospitalization days after a first assessment in an Expert Center. No study was found on patients suffering from autism, resistant depression or schizophrenia.</td></tr><tr><td>Limitations and Uncertainty</td><td>Press articles and documents related to advocacy activities did not acknowledge the limitations of the study about bipolar patients, in particular the lack of a control group.</td><td>The study about bipolar patients plausibly overestimates the therapeutic effect exerted by a first assessment in an Expert Center because the data can be rather explained by a regression to the mean and because there is no control group.</td></tr><tr><td>Competing Interest Declaration</td><td>Several co-authors of the study by Henry et al. (2017) signed the open column asking the generalization of Expert Centers on the basis of their therapeutic effectiveness (i.e. a 50% reduction in hospitalization days after a first assessment), although this column did not mention the limitations of the study and the fact that it cannot be generalized to other pathologies.</td><td>Henry et al. (2017) acknowledged the support by the FF but did not mention that the FF is partly funded by pharmaceutical companies.</td></tr><tr><td>Acknowledging tradeoffs</td><td>Expert Centers assess patients who are not hospitalized or in crisis and provide recommendations to patients' treating physicians. However, these recommendations are often difficult to implement due to the lack of resources. The benefit of the centers should be seen in context of their running costs vs. the standard infrastructure already in place.</td><td></td></tr><tr><td>Expert Use</td><td>Among the 29 FF members involved in the FF advocacy, 22 led an Expert Center in 2024. However, many other practitioners in the field of psychiatry question the relevance of the Expert Center model; it would be relevant to ensure representative and diverse expert feedback.</td><td></td></tr></tbody></table>

2020). According to this US law, an academic institution must register its lobbying activities if they are pursued on behalf of the institution, and if its representatives spent more than 20 % of their time engaged in lobbying (Fernandez Lynch et al., 2020). Therefore, the French law is less stringent than the US law. To improve the transparency of the lobbying, the French law should align with the US law. Third, as sci- entists involved in science studies, we should redouble our efforts to inform journalists and politicians about the pitfalls of the biomedical literature. In a case of problematic advocacy conducted by an academic scientific institution, it is our duty, as scientists and citizens, to publicly question it.

### CRediT authorship contribution statement

François Gonon: Writing – review & editing, Writing – original draft, Visualization, Validation, Supervision, Project administration, Methodology, Investigation, Formal analysis, Data curation, Conceptu- alization. Henri Gouraud: Writing – review & editing, Investigation, Conceptualization. André Gillibert: Writing – review & editing, Meth- odology, Formal analysis. Bruno Falissard: Writing – review & editing, Investigation, Conceptualization. Lisa Cosgrove: Writing – review & editing, Conceptualization. Kasper P. Kepp: Writing – review & editing,
Conceptualization. **Ioana A. Cristea:** Writing – review & editing, Validation, Investigation, Conceptualization. **Florian Naudet:** Writing – review & editing, Writing – original draft, Methodology, Investigation, Formal analysis, Conceptualization.

## Declaration of competing interest

- François Gonon: None.

- Henri Gouraud: None.

- André Gillibert: None.

- Bruno Falissard: None.

- **Lisa Cossgrove:** She is part of the Lown List of Industry-Independent Health Experts.

- **Ioana Cristea:** She is part of the Lown List of Industry-Independent Health Experts.

- **Kasper P. Kepp:** None.

- **Florian Naudet** received funding from the French National Research Agency (ANR-23-CE36-0006), the French Ministry of Health and the French Ministry of Research. He is a work-package leader in the OSIRIS project (Open Science to Increase Reproducibility in Science). The OSIRIS project has received funding from the European Union's Horizon Europe research and innovation programme under grant agreement No. 101094725. He is a work-package leader for the doctoral network MSCA-DN SHARE-CTD (HORIZON-MSCA-2022-DN-01101120360), funded by the EU. He is part of the Lown List of Industry-Independent Health Experts.

## Appendix A. Supplementary data

Supplementary data to this article can be found online at https://doi.org/10.1016/j.ssmmh.2025.100464.

## References

Akl, E.A., Khamis, A.M., 2019. The intersections of industry with the health research enterprise. Health Res. Pol. Syst. 17, 53. https://doi.org/10.1186/s12961-019-0457-7

Armstrong, E.M., Carpenter, D.P., Hojnacki, M., 2006. Whose deaths matter? Mortality, advocacy, and attention to disease in the mass media. J Health Polit. Pol. Law 31, 729-772. https://doi.org/10.1215/03616878-2006-002.

Bauer, E., Thiel, M., Vlad, I., 2018. In: Service, E.P.R. (Ed.), New Lobbying Law in France.

Best, R.K., 2012. Disease politics and medical research funding: three ways advocacy shapes policy. Am. Sociol. Rev. 77, 780-803. https://doi.org/10.1177/0003122412458509.

Boutron, I., Ravaud, P., 2018. Misrepresentation and distortion of research in biomedical literature. Proc. Natl. Acad. Sci. U. S. A. 115, 2613-2619. https://doi.org/10.1073/pnas.1710755115.

Calcagnini, G., Favaretto, I., Giombini, G., Perugini, F., Rombaldoni, R., 2016. The role of universities in the location of innovative start-ups. J. Technol. Tran. 41, 670-693. https://doi.org/10.1007/s10961-015-9396-9.

Chiu, K., Grundy, Q., Bero, L., 2017. 'Spin' in published biomedical literature: a methodological systematic review. PLoS Biol. 15, e2002173. https://doi.org/10.1371/journal.pbio.2002173.

Chung, D.T., Ryan, C.J., Hadzi-Pavlovic, D., Singh, S.P., Stanton, C., Large, M.M., 2017. Suicide rates after discharge from psychiatric facilities: a systematic review and meta-analysis. JAMA Psychiatry 74, 694-702.

Costantino, G., Montano, N., Casazza, G., 2015. When should we change our clinical practice based on the results of a clinical study? Searching for evidence: PICOS and PubMed. Internal and Emergency Medicine 10, 525-527. https://doi.org/10.1007/s11739-015-1225-5.

Cummings, P., 2013. Missing data and multiple imputation. JAMA Pediatr. 167, 656-661. https://doi.org/10.1001/jamapediatrics.2013.1329.

Desplats, M., 2023. Korian devient partenaire de la Fondation FondaMental. Clariane.

Dumas-Mallet, E., 2019. Regard des journalistes scientifiques sur l'actualité de la recherche biomédicale. Hermès 83, 227-232.

Dupays, S., Emmanuellli, J., 2020. Les centres médico-psychologiques de psychiatrie générale et leur place dans le parcours du patient. Inspection Générale des Affaires Sociales.

Espi, P., Winter, M., Falissard, B., Blay, M., Anastasi, A., Maggi-Perpoint, C., et al., 2023. Organisation des soins en santé mentale : quelle juste place pour les centres experts en pédopsychiatrie. L'Information Psychiatrique 99, 551-558. https://doi.org/10.1684/ipe.2023.2632.

Fabbri, A., Holland, T.J., Bero, L.A., 2018. Food industry sponsorship of academic research: investigating commercial bias in the research agenda. Public Health Nutr. 21, 3422-3430. https://doi.org/10.1017/S1368980018002100.

Farooq, F., Mogayzel, P.J., Lanzkron, S., Haywood, C., Strouse, J.J., 2020. Comparison of US federal and foundation funding of research for sickle cell disease and cystic fibrosis and factors associated with research productivity. JAMA Netw. Open 3, e201737. https://doi.org/10.1001/jamanetworkopen.2020.1737.

Fernandez Lynch, H., Bateman-House, A., Rivera, S.M., 2020. Academic advocacy: opportunities to influence health and science policy under U.S. Lobbying law. Acad. Med. 95, 44-51.

Ghannad, M., Olsen, M., Boutron, I., Bossuyt, P.M., 2019. A systematic review finds that spin or interpretation bias is abundant in evaluations of ovarian cancer biomarkers. J Clin. Epidemiol. 116, 9-17. https://doi.org/10.1016/j.jclinepi.2019.07.011.

Godin, O., Leboyer, M., Mazroui, Y., Aouizerate, B., Azorin, J.M., Raoul, B., et al., 2020. Trajectories of functioning in bipolar disorders: a longitudinal study in the FondaMental advanced centers of expertise in bipolar disorders cohort. Aust. N. Z. J. Psychiatr. 54, 985-996. https://doi.org/10.1177/0004867420945796.

Hegde, D., Sampat, B., 2015. Private money buy public science? Disease group lobbying and federal funding for biomedical research. Manag. Sci. 61, 2281-2298.

Henry, C., Godin, O., Courtet, P., Azorin, J.M., Gard, S., Bellivier, F., et al., 2017. Outcomes for bipolar patients assessed in the French expert center network: a 2-year follow-up observational study (FondaMental Advanced Centers of Expertise for Bipolar Disorder [FACE-BD]). Bipolar Disord. 19, 651-660. https://doi.org/10.1111/bdi.12539.

Insel, T., 2022. Healing: Our Path from Mental Illness to Mental Health. Penguin Press.

Kepp, K.P., Hoilund-Carlsen, P.F., Cristea, I.A., Cumming, R.G., Daly, T., Emilsson, L., et al., 2025. Communicating scientific evidence: drugs for Alzheimer's disease as a case study. Curr. Med. Res. Opin. 1-15. https://doi.org/10.1080/03007995.2025.2458530.

Laidi, C., Blampain-Segar, L., Godin, O., de Danne, A., Leboyer, M., Durand-Zaleski, I., 2023. The cost of mental health: where do we stand in France? Eur. Neuropsychopharmacol. 69, 87-95. https://doi.org/10.1016/j.euroneuro.2023.02.004.

Leboyer, M., 2024. In: FondaMental, Fondation (Ed.), Psychiatrie et santé mentale : parlementaires, institutionnels et usagers appelleront à généraliser les Centres Experts.

Leboyer, M., Godin, O., Llorca, P.M., Aubin, V., Bellivier, F., Belzeaux, R., et al., 2022. Key findings on bipolar disorders from the longitudinal FondaMental advanced center of expertise-bipolar disorder (FACE-BD) cohort. J. Affect. Disord. 307, 149-156. https://doi.org/10.1016/j.jad.2022.03.053.

Leboyer, M., Llorca, P.M., 2018. Psychiatrie: l'état D'urgence. Arthème Fayard, Paris.

Loi relative à la transparence, à la lutte contre la corruption et à la modernisation de la vie économique, 2016. n° 2016-1691. https://www.legifrance.gouv.fr/dossierlegislatif/JORFDOLE000032319792/.

Marks, J., 2019. The Perils of Partnership: Industry Influence, Institutional Integrity and Public Health. Oxford University Press, New York.

Martinuzzi, E., Barbosa, S., Courtet, P., Olié, E., Guillaume, S., Ibrahim, E.C., et al., 2021. Blood cytokines differentiate bipolar disorder and major depressive disorder during a major depressive episode: initial discovery and independent sample replication. Brain Behav Immun Health 13, 100232. https://doi.org/10.1016/j.bbh.2021.100232.

Mournet, B., 2024. In: Nationale, A. (Ed.), Question au gouvernement n°622: Centres experts en santé mentale. Paris: Journal officiel.

Nickerson, R., 1998. Confirmation bias: a ubiquitous phenomenon in many guises. Rev. Gen. Psychol. 2, 175-220. https://doi.org/10.1037/1089-2680.2.2.175.

Peters, H.P., 2012. Scientific sources and the mass media: forms and consequences of medialization. In: Rödder, S., Franzen, M., Weingart, P. (Eds.), The Sciences' Media Connection – Public Communication and its Repercussions. Springer Science, pp. 217-239.

Proposition de loi visant à prendre des mesures d'urgence pour la santé mentale. 2024. n° 2586. https://www.assemblee-nationale.fr/dyn/16/textes/116b2586proposition-loi.

Qadir, A., Syväterä, J., 2021. The moral authority of science: evidence from parliamentary debates in seven countries. European Journal of Cultural and Political Sociology 8, 265-293. https://doi.org/10.1080/23254823.2021.1885461.

Reardon, S., 2014. Lobbying sways NIH grants. Nature 515, 19. https://doi.org/10.1038/s15019a, 19.

Rose, S.L., 2013. Patient advocacy organizations: institutional conflicts of interest, trust, and trustworthiness. J. Law Med. Ethics 41, 680-687.

Schippers, M.C., Kepp, K.P., Ioannidis, J.P.A., 2025. Biases and debiasing in policy decision-making. Eur. J. Clin. Invest., e70064 n/a.

Schwartz, L.M., Woloshin, S., Andrews, A., Stukel, T.A., 2012. Influence of medical journal press releases on the quality of associated newspaper coverage: retrospective cohort study. BMJ 344, d8164. https://doi.org/10.1136/bmj.d8164.

Serodio, P., Ruskin, G., McKee, M., Stuckler, D., 2020. Evaluating Coca-Cola's attempts to influence public health 'in their own words': analysis of Coca-Cola emails with public health academics leading the Global Energy Balance Network. Public Health Nutr. 23, 2647-2653. https://doi.org/10.1017/s1368980020002098.

Sumner, P., Vivian-Griffiths, S., Boivin, J., Williams, A., Venetis, C.A., Davies, A., et al., 2014. The association between exaggeration in health related science news and academic press releases: retrospective observational study. BMJ 349, g7015. https://doi.org/10.1136/bmj.g7015.

Van Zee, A., 2009. The promotion and marketing of oxycontin: commercial triumph, public health tragedy. Am J Public Health 99, 221-227. https://doi.org/10.2105/ajph.2007.131714.

Willson, P.D., 2020. The importance of lobbying to advance health and science policy. Acad. Med. 95, 13-15.

Woloshin, S., Schwartz, L.M., Casella, S.L., Kennedy, A.T., Larson, R.J., 2009. Press releases by academic medical centers: not so academic? Ann. Intern. Med. 150, 613-618.