Biomedical articles on MEpedia - purposes and pitfalls

[InfiniteRubix]

I totally agree that there are degrees of moderation and moderation quality, and ideally the wiki should evolve to continually improving moderation, with experts involved. It has to, for validity.

Just playing devil's advocate now: there will always be a challenge for moderating disinformation and conflict. My point is not that we shouldn't moderate. I am highlighting the inevitabilities preemptively, so that we don't allow the observation of human fallibility stop improved moderation. Science has to be about minimising human foibles, bias and subjectivity.

https://news.google.com/s/CAoiMkNCS...JwWVNCdGIyUmxjbUYwYjNJb0FBUAE?shl=en&r=11&oc=

While I am at it, the initiative does deserve praise for it's existence. I really believe in does.

 

[Jonathan Edwards]

To some extent, I'm not sure how high standards we can have for a patient wiki - misinformation is included in all wikis, and really users should be aware of that. I only use them as a way of finding other sources to check.

'Expert' oversight could also lead to the chosen experts just pushing their own misleading information? I'm afraid that I've been left with very little respect for the idea of turning to supposedly unbiased experts.

I think the example of the London Bird Club Wiki may be useful. It is rare to have unreliable information on it for more than an hour or so. And this has nothing to do with scientific rigour or problems with authorities and pseudo-authorities. It is purely a matter of reliable information, as judged by methodology. Either a bird reported as being seen somewhere can be reliably considered to have been seen, or not.

Birdwatchers are only concerned with reliability. We want to know the likelihood that when an Isabelline Whetear is reported at Dungeness that there actually was one there and that it might be worth getting in the car and driving 100 miles to catch sight of it. As a community we have a common purpose in policing information sites and we defer to those who after years of practice know how to judge reliability. The cold hard truth becomes clear often enough for us to determine that.

I am not sure that the situation for PWME wanting information should be that different. All that is needed is for a community to have a strong motivation to check reliability. It is perfectly acceptable to log uncertain findings. Nobody minds if you log Apus sp. in October, indicating that a swift was seen but the species not identified, with everyone understanding that in June this would be pointless since 99.9% of sighting are common swift but in October up to 50% may be pallid swifts. Similarly nobody should mind if uncertain information is put on MEPedia. But it should be free of statements known to be unreliable, given as if accepted facts.

If expert oversight is limited to pruning back unreliable information or inserting caveats I am not sure it need be problematic.

 

[InfiniteRubix]

I am going to reference my other posts here. At the end of the day, it appears that MEPedia is at the heart of the recent scientific rigour/ME Action discussions, in practice and as things stand.

It is very easy to add a flag for wiki articles, with only specific drop down options available to define how consensus or how much of a bet a scientific finding is. Those options would be defined by moderators.

The collateral benefit from this honest rigour is not just the direction of research dollars that this then allows, it also quantifies the state of the research landscape for policy and political purposes i.e. how poor or improving it is.

Thank you again @Michiel Tack for this. I think that @Jonathan Edwards, @Trish and @strategist covered the appropriate issues wonderfully in reply also. These are powerful contributions.

I think that it's possible that this wider conversation, including recent more specific threads, is caused by a misconception on ME Action's part. They are worrying about cultural differences holding treatment options back to a lowest common denominator (@JaimeS @EspeMor please tell me if I am over egging the importance of this to the view). The observation of differences is obviously correct, but I believe that it is a mistake to think that they are relevant to scientific determination.

There are indeed different structures and cultures in medicine between the US and Europe, with the UK NHS:NICE model not existing there, for example. NICE is also followed by insurers in the UK - but UK pwME know well that any person can pay any medic privately to treat outside NICE guidelines (as long as the General Medical Council don't perceive abjectly wrong practice).

Conclusion? "99%" of the time the treatment options are actually the same in the US, despite any differences in culture, pharma incentivisation or overall system. So the concern shouldn't be culture blocking access to options, as that's not the case from what I can see. I'd like someone to correct me, but I would also guess that most differences in access come from physical proximity to to a specific innovation or clinician. Again, not culture.

But there is a difference that comes from culture and that difference is what is causing this misconception: the percentage split between

1. patients whose treatments are defined by scientific consensus and
2. patients making a good elective scientific bet that is not yet consensus

Maybe the split is 90:10 in the US and 99:1 in the UK, who knows? That different ratio is the consequence of the cultural or structural differences that they have spoken about - I think this may be the cause of misconception.

This all being said, I think the onus is on ME Action to word things and structure things to make a clear distinction between the two types of treatment bulleted above. This is important for any system or hypothetical ratio value. This distinction does not define access itself, but only defines the status of the science. The science inherently doesn't care what that ratio is or why it might differ by culture. It just cares about the findings, how one got there and how one caveats along the way. We have to bend to scientific process and probity, not the other way around.

Apologies if I'm running over old ground. There's just so much to read on this and recent relevant threads and I can't cope with it all just now.

Exactly, and what that then opens up is expansion on what we've both said, which is how does one determine what the status is of a scientific issue? Because obviously can't be democracy, particularly for democracy's sake.

It's just a case of taking classic principles of scientific governance. My little split between two dimensions would of course be split into many other phases in practice, a proper pipeline of evolving status. At a minimum there would be a third dimension: good ideas that haven't been tested in any way all all and shouldn't be bet on yet by patients.

In fact, there would be no need to rework the wheel on this. Exactly this kind of governance is par for the course across research institutions and pharmaceutical companies. I'm sure that pharmaceutical research project managers have industry standard jargon for these phases, which could be adopted.

One way or another ME Action needs to account for this to be credible and not end up inadvertently dangerous on the scientific front one day. Being an advocacy organisation does not have to mean being involved in scientific discussion - so if an organisation is involved, the first principle has to be do no harm (in this case by mixing up consensus treatments with good bets or unknown bets).

Those are are questions that are answered by best practice research governance and project management, from which useful categories of status could be defined.

It doesn't matter if some categories are totally empty, which could be the case for nearly everything for us because of research neglect. We have to get those principles right first though, and take the world as we actually find it. Which scientific findings go where is a second order question.

 

[Wilhelmina Jenkins]

Since so much of the discussion has been about treatment, I went to check the treatment page. It’s almost completely a giant disclaimer.

https://me-pedia.org/wiki/Category:Potential_treatments

 

[Jonathan Edwards]

Since so much of the discussion has been about treatment, I went to check the treatment page. It’s almost completely a giant disclaimer.

https://me-pedia.org/wiki/Category:Potential_treatments

That particular page is but there are lots of other ways in that take you to accounts of treatments or rationales for treatments that are not giant disclaimers.

The problem as I see it is that giant disclaimers can easily be ignored on the grounds that 'they have to put a disclaimer to cover themselves'. What matters is that the content of articles has realistic balance in terms of evidence and I don't see that a lot of the time.

If MEPedia sets out to be a general chat room covering the sort of material you would find in popular magazines or health sections of mass circulation newspapers then the material is pretty much what one might expect. I would like to see an advocacy organisation the sets out to provide patients with reliable information as something very different from that. For me there is a problem with blurring of objectives.

 

[InfiniteRubix]

Disclaimers have a role, but the context is a medical landscape unusually dominated by varying degrees of speculative treatments and desperate patients with no options. so I don't think a disclaimer is enough, it needs some kind of per topic tagging of relative scientific status.

 

[Wilhelmina Jenkins]

One of the reasons that I like this forum is that I am, by nature and training, a skeptic. One of my greatest frustrations is that, in the current situation, very few advocates ask the difficult questions of researchers and clinicians about research and treatments. I also feel that there should be more of a firewall between research groups and advocacy organizations.

Personally I am very skeptical of currently available treatments and, aside from treating pain and sleep disorders, I avoid them. My ME/CFS doctor is also conservative, which suits me very well. We were slightly less conservative for my daughter, but still unwilling to go past treatments with extremely low possibilities of damage. No antivirals, no Ampligen, nothing extreme.

In spite of my personal opinions, I still would hate to lose a valuable resource like ME-pedia. I use it a lot, but not to look up treatments. I hope that, when the conversation that @Michiel Tack began with ME Action is revisited next year, as many of you as are able will be a part of that conversation and help make ME-pedia an even more valuable resource. Wikis are meant to be improved by users.

 

[Dx Revision Watch]

... Wikis are meant to be improved by users.

Indeed.

The content of any wiki is anticipated to be expanded on, re-edited where clarity is lacking or where content would benefit from additional references, incorporation of new information etc.

But if the existing content isn't accurate or cannot otherwise be relied upon - what purpose does it serve?

How is a reader (professional or lay, patient, carer or journalist) coming across these MEpedia pages expected to determine which MEpedia content has been fact checked, which content is evidence based, which "scientific" content has been included because it is of personal interest to a specific editor, and which content is erroneous and shouldn't be relied on because it is waiting "to be improved"?

The content of some Articles on Wikipedia cannot be edited until proposed changes to an Article Page, as it stands, have first been discussed on the Article Page's Talk Page, references provided in support of the proposed edit (that meet the Wikipedia requirements for reference sources) and consensus on the proposed edit has been reached.

Only then, when consensus has been reached, is the edit incorporated into the Article Page.


Some months ago, I alerted Jen and Jaime to an MEpedia page for which the text had been lifted from promotional material for a book about a dubious NLP based therapy - the Article Page content read like an advert for the book.

I'd assumed the page had been created by the author or someone representing the author, but this was not the case. The content had been placed there by an "ME community" editor who had done work on other pages.

The content (basically book jacket blurb) appeared to me to contravene MEpedia's guidelines. But neither Jen nor Jaime seemed to know what the MEpedia protocol was for the prompt removal of content that contravenes the guidelines.

Instead, I was initially told to "Jump in, anyone can edit."

I have an MEpedia User Account but I did not have the time and I had no wish to spend my time editing a page on a non evidence based NLP therapy that is being offered commercially. But no-one appeared to be able to advise me what action should be taken.

Jen and Jaime then engaged on Twitter (a public platform) in a discussion between themselves of what the policy (if any) was or should be, and appeared to me to be forming policy "on the hoof."

Eventually they agreed they would arrange for the page to be promptly taken down.

Whether there is now a system in place for red flagging inappropriate content for referral for rapid review, removal or urgent re-editing, or whether any editor is permitted to entirely blank a page or delete a page, I cannot say. But I hope there is now some readily accessible guidance that covers these situations.

In the early days of MEpedia, one editor had listed Judy Mikovits as a British researcher.

If an error like that - which could have been fact checked in a few seconds - (it is the first line for the Wikipedia Article Page for Mikovits) can be included and then sit there for weeks/months before anyone dealt with it, I can have no confidence in the overall accuracy or utility of the project.

 

[Wilhelmina Jenkins]

This is the time when Values & Policies are being reviewed by ME Action. Perhaps in the review next year that was discussed when @Michiel Tack received his response, a particular area of emphasis should be ME-pedia. I would certainly support that.

ME Action is covering a lot of ground in this community for a very young organization with a small staff and not much money. It may have been more prudent to have moved slowly in the number of tasks that they have undertaken, but so much of what has been accomplished has been valuable.

I think that your impression that many policies are created on the fly is correct, but that’s what the whole V & P initiative is about. An organization largely run by sick people will have issues that have to be resolved. I have brought up issues myself in terms of policies that ME Action has not been able to address yet.

It’s difficult to go through a V & P process at the same time as leading major advocacy efforts. But V & P is important and will happen. As I have said, I’m not in the leadership or a staff member - I’m just a volunteer. But I do believe that those in the leadership are principled people trying to build an organization that functions well and is as inclusive of as many people’s opinions as possible. I think that pointing out the problems with ME-pedia and, if possible, helping to correct them, is a good thing.