Improving collaborative care networks for functional disorders and persistent somatic symptoms: a participatory action research study... 2025 Mamo+

[Andy]

Full title: Improving collaborative care networks for functional disorders and persistent somatic symptoms: a participatory action research study in the Netherlands

Author list: Nick Mamo, Denise J C Hanssen, Sylvia Korten, Tim C Olde Hartman, Judith GM Rosmalen, Lineke Tak

Abstract​

Background Persistent somatic symptoms and functional disorders are conditions requiring a biopsychosocial approach to care, often from multiple professionals. The fragmentation of care common in most health systems results in unsatisfactory and challenging care experiences. Collaborative care networks form an important route towards improving outcomes and the overall experience of care for patients and professionals. While we have a good idea of what such collaborative care networks can look like, we lack knowledge on the practicalities of implementing change in such networks.

Objectives The core objective of this study is to implement change in a collaborative care network for persistent somatic symptoms and functional disorders care. Our questions were twofold: first, what are examples of realistic action processes to improve such collaborative care networks? Second, what are, in our experience, conditions for an effective change process in such a collaborative care network?

Design Participatory action research approach embedded within an active regional network between May 2023 and May 2024. The process was led by an action group who selected objectives and related actions with the aim of improving the network, leading to better care for people with persistent somatic symptoms and functional disorders as well as improving satisfaction among professionals.
Setting ALK Netwerk Salland, a regional network of professionals and experts-by-experience, focused on care of persistent somatic symptoms. This network is based in the Salland region in the east of the Netherlands, centred around the city of Deventer.

Participants The action group was made up of local stakeholders including experts-by-experience and health and social care professionals, facilitated by a researcher-in-residence. Other participants included members of the regional network who provided input towards the different objectives.

Results Over the course of a year, three objectives were selected and enacted, including assessing the resources of the network, improving knowledge of treatment options and improving the shared vision of care. The process faced some challenges, such as changes in action group members and a lack of resources and time to enact changes. However, by having a trusted and engaged team, working with an active network, we were able to enact significant changes to the network, which may be sustained and built on through the ongoing action group.

Conclusions Future participatory action research studies would benefit from a trusted and embedded researcher-in-residence, meaningful involvement early in the process of experts-by-experience, and serious consideration of realistic outcome measures to monitor for evaluation of changes made.

Open access

 

[Hutan]

Part of the ETUDE programme: Encompassing Training in fUnctional Disorders across Europe

The current study is part of the innovative training network Encompassing Training in fUnctional Disorders across Europe (ETUDE), ultimately aiming to improve the understanding of mechanisms, diagnosis, treatment and stigmatisation of FD.4

 

[Hutan]

It seems to be a blow by blow account of group set up to push forward the Functional Disorders agenda. Reading between the lines, and even the actual content at times, thankfully, it's sounding pretty ineffective.

I think it's another one for the 'I can't believe that anyone thought this was science' bucket. It's actually pretty funny.

With regards to the enacted three objectives, the main actions were:

1. Assess resources of the network
   Here, the action group wanted to identify any financial support we could access, which was unfortunately found to be restricted currently. This limits the actions we could take.

Throughout the process, there were some changes in personnel. One expert-by-experience left shortly before the first meeting for health reasons, with another expert-by-experience replacing them in the action group. Another expert-by-experience left later in the process due to time and financial limitations. A psychologist joined the action group late in the process, as did the new network coordinator. Initially, LT was not directly involved in the action group, to avoid reliance on them as a recognised network leader. However, due to challenges with moving actions forward, following discussion between NM and LT, and with agreement from the action group, LT joined from the fourth session.

Aside from quickly agreeing with the suggestion of taking on two objectives, one relatively easily achievable and another requiring more time, decision-making on the objectives to take on was slow, and more so the actions to take for each. Meetings were very lively, with a lot of deep discussion, open disagreement and building consensus with both practical and conceptual discussion.

A lot of discussion focused around what the network looks like, what matters to the network and therefore what should be dealt with first and would likely have an impact. This included a long discussion about the relevance to the network of the quality indicators from which we had agreed to pick our objectives. For this reason, meetings were longer than expected: 2 hours instead of the initial idea of 90 min. This is reflected by feedback after the last included meeting, with a reflection that a further introductory meeting to understand more what the action group was for would have been helpful

One member of the action group fed back that they would have preferred more time to get to know each other, in particular, each other’s experiences and views, to improve social cohesion within the group. On the other hand, another group member felt that ‘There was just too much ‘talking around’ during the action group meetings without achieving anything’ (feedback form response).

For most in the network, there is a lack of time for such activities, in spite of the clear motivation for the work of the action group. This was compounded by the lack of resources available, shown in the loss of a highly engaged action group member due to not having sufficient time and financial support.

Often, persons would state that time to complete actions or produce content was only available many weeks in the future from the email being sent. Repeatedly, emails would then be received apologising for not sending replies and that clinical duties got in the way.

The actions were, therefore, completed over a longer duration, with a lot of the content production being undertaken by LT. This related in particular to the production of the text for the website (action 2.3) and recruitment for videos (action 2.4). The vast majority of email work (such as recruiting network members to produce and review content) was done by LT and NM.

Reflecting on the process, it at times felt that the actions being taken were practitioner-focused, with concern being raised as to whether the involvement of experts-by-experience was sufficiently centred in our actions, or whether it was tokenistic.

 

[Peter T]

At first glance it feels to me that this is part of an increasing trend to focus on imposing a consensus amongst professionals, and secondarily amongst patients, as to what the desired narrative should be. Imposing the ‘correct’ narrative seems more important than understanding the coherence of this/these clinical groupings or the effectiveness of any interventions.

 

[rvallee]

Persistent somatic symptoms and functional disorders are conditions requiring a biopsychosocial approach to care, often from multiple professionals. The fragmentation of care common in most health systems results in unsatisfactory and challenging care experiences.

They are already getting this "biopsychosocial approach", and it's why it "results in unsatisfactory and challenging care experiences". What are they even talking about here? Pretending like they're just getting started with this and that their ideas have not been tried before. There are people past retirement age who did this their entire career!

Plus it obviously does not "require a biopsychosocial approach". All of this is a choice, and a terrible one at that. It's their choice, and it's why things are horrible.

Do they not understand that the only parts of medicine that work are purely based on science? Because science works. This is not science, and it does not work. None of this is difficult, but they choose to do this anyway. This approach will never achieve anything. It hasn't. It can't, it's guaranteed to fail because it has no reason to exist other than some people wanting it to be true more than they care that it's obviously not.

From the excerpts by @Hutan, it does appear that this project was a spectacular failure and a waste of everyone's time. Now that's biopsychosocial. Nevertheless they still conclude that they should continue, while pretty much admitting that they have achieved nothing but seem to feel good about it anyway.

Reflecting on the process, it at times felt that the actions being taken were practitioner-focused, with concern being raised as to whether the involvement of experts-by-experience was sufficiently centred in our actions, or whether it was tokenistic.

Oh, geez, what a surprise. Say it ain't so! Tokens gets spent. Always. It's their only purpose.

 

[rvallee]

This felt comically awful enough to read a bit further. All the "strengths" they list in the highlights are purely aspirational. Assertion-based medicine: because I say so. Gee, I wonder why this fails.

Two of the experts-by-experience also had professional clinical experience, which allowed them to consider different perspectives from experience, and potentially made it easier for them to challenge other clinicians.

So two of the "patient representatives" were themselves clinicians. You'll never guess how many there were in total. Well, you probably would, by simply counting down from three. Once. 2 out of 3 of the "patient representatives" were themselves clinicians. This is a collaborative process.

A challenge that was not considered sufficiently in advance was that of having experts-by-experience being unable to participate due to financial limitations.

These people claim to be experts on this patient population, and they don't know some of the most basic things about them.

However, as seen in the first objective, we also found that limited resources hampered our ability to effect change, due to lack of funds, which would allow for creation of higher quality content directly. The issue of lack of resources comes up against the recognition that often resources, especially financial, are only made available once a strategy is already proven effective.

Seriously this is a parody of total lack of self-awareness and self-reflection. Obviously resources are not available for ineffective speculative nonsense. It seems that they produced some text and videos, as if that's actually needed by anyone, but I guess they find they're low quality.

Instead, we depended on the presence of a product as an outcome in itself rather than being able to measure the product’s impact.

Literally a participation trophy. Literally. What's that trophy for? For having a trophy, of course!

Finally, the in-built planning to keep the action group going once the study window ended meant that the work of the action group could continue, with the aim of increasing the impact of the actions taken. In this way, the process of this study primarily provided a framework around which to start working as well as giving the action group a sense that this is not about the research but about improving the quality of the CCN for PSS/FD.

As far as I can tell it did not continue, though. But they still mention something in the past as something that could have happened and therefore is a strength. This is about as compelling as trying to find someone's best qualities and being to come up, at best, with something like "they don't quite smell bad, I think?"

Creating a group of stakeholders to drive and implement change in a CCN for PSS/FD is clearly a realistic way to improve the service provided.

Is it possible to get a group of people to talk about things that don't end up happening? What a mystery!

Third, with regards to assessing the impact of the changes implemented, serious consideration should be taken to measuring outcomes.

Seriously how is this not actual satire of research?

Good grief this is embarrassing. A luxury caterer serving microwaved hot-dogs, one per head, no condiments, should feel great about themselves compared to this. How is this even a thing?!

 

[Utsikt]

This makes me slightly less worried about the FND people, because this has to be one of the messier project reports I’ve ever read. There is nothing of substance here, at all, and it doesn’t look like they are very good at getting things done.

 

[rvallee]

I don't know, the fact that they are definitely winning this despite how completely mediocre everything they are doing is only shows how there are deep forces within the profession pushing for this that truly don't care what's real or isn't and we just can't find shadows. They can get away with farting in a general direction and somehow get prizes and trophies for it. Not that we haven't known that for years.

It all just shows how nothing matters when it comes to the unsolved problems of medicine, how evidence is irrelevant and how beliefs drive everything. Which is definitely not good. We can't fight ideas.

This will never achieve anything, that's 100% guaranteed. But it is winning in fighting back against our existence, which as far as I'm concerned is all the reason it exists. And by us I don't mean ME/CFS and by it I don't mean FND but the general belief in Freud's very bad ideas.

 

[Sean]

Third, with regards to assessing the impact of the changes implemented, serious consideration should be taken to measuring outcomes.

Don't you think you should have thought of that and adequately implemented it from day one of your grand FND project?

This is what happens when you let clowns with Big Important Ideas™ play with people's lives.

 

[Utsikt]

I don't know, the fact that they are definitely winning this despite how completely mediocre everything they are doing is only shows how there are deep forces within the profession pushing for this that truly don't care what's real or isn't and we just can't find shadows. They can get away with farting in a general direction and somehow get prizes and trophies for it. Not that we haven't known that for years.

It all just shows how nothing matters when it comes to the unsolved problems of medicine, how evidence is irrelevant and how beliefs drive everything. Which is definitely not good. We can't fight ideas.

This will never achieve anything, that's 100% guaranteed. But it is winning in fighting back against our existence, which as far as I'm concerned is all the reason it exists. And by us I don't mean ME/CFS and by it I don't mean FND but the general belief in Freud's very bad ideas.

They are getting resources, but they seem incapable of doing anything with them.

 

[rvallee]

Don't you think you should have thought of that and adequately implemented it from day one of your grand FND project?

This is what happens when you let clowns with Big Important Ideas™ play with people's lives.

The even more absurd things is that psychosomatic medicine cannot ever measure outcomes because then it reveals the whole scam. Same reason why alternative medicine doesn't measure outcomes. You don't measure when you know nothing changes.

But they will say it. They will pretend like it's a thing they do and that it's a strength. But they will never actually do it. At least not more than a few times, then having to explain why the lack of any measurable change in outcome actually means not only that it works, but that it proves that it's all perception. Doesn't matter that it means the opposite.