Open Request: External collaborator (co-creator) required for "Participatory Action in Research and Education" course

Someone I know, who is a lecturer and researcher at Amsterdam University, has asked me to be an external collaborator (‘co-creator’) in a course where students are taught to do research in collaboration with community members, tailored to actionable goals for the empowerment of the community.

I have had many conversations with Dr. Ileana Grama over the years. As a consequence she is interested in ME/CFS, how (historically) patients have been spoken over and how narratives have been forged about us that do not reflect our true situation and how this, in turn, has led to poor research agendas which just serve to uphold the problem-riddled staus quo.

We have both both struck how much overlap there is in how folk with autism and neuro-diversity in general (an area in which Dr. Ileana specialises) have often been been mis-characterised and therefore poorly served in research.


Here is the full e-mail Ileana sent me:

"We discussed before whether IN PRINCIPLE you would be interested to be an external collaborator (‘co-creator’) in a course where we teach students to do research in collaboration with community members, tailored to actionable goals for the empowerment of the community.


The course is called Participatory Action in Research and Education and is starting in February (it last through the teaching period of Feb and March, during which this course takes up 50% of the full time students dedicate to their studies – just to give you an idea of the workload).


So I am writing to ask: would you be willing to be a co-creator with a student research team on a small research project involving ME (or disability in general)? Note that students might be interested in your other intersectionalities as well (how you diagnosis interacts with gender, migrant status, how it is seen or accommodated in the Polish community or in your religious community, how these intersectionalities determine how you are treated by healthcare professionals, etc.)


Concretely, our students (working in teams of roughly 4) are meant to (i) reach out to and meet with you, (ii) formulate a research question/aim for their project based on your priorities and values (iii) meet with you to discuss the implementation (methodology) of the project, as well as ethics, data collection, data analysis and dissemination and (iv) carry out a literature review, draft a research proposal, carry out data collection and analysis and write up a research report and dissemination piece on their own.


You may discuss with students about interviewing community members (that you can recruit together), doing focus groups or online questionnaires, or interviewing people like healthcare professionals, religious leaders etc. about their attitude towards people with ME, and the facilities they offer in their communities that would be valuable. Importantly, while your role will be to set priorities, discuss and agree on strategies and procedures, and maybe suggest relevant source of information, you should not be doing any of the actual work. Students are the ones that need to summarize scientific literature on the topic (but you can send them back to the drawing board or give them feedback if you don’t find that satisfactory), do the data collection, prepare all materials, and do the legwork of all the practicalities.


Our needs from you would be that you are able to meet with student teams (online or not, depending on the members’ preference) in about 4 sessions (30-60min) during block 4 on roughly the schedule outlined below:

Before and during Week 3: say 15-21 February – to decide on a research aim for the project

Before and during Week 4: - say 22Feb - 1 March – to discuss the scientific literature, decide on a methodology and ethical procedures

Before and during Week 5 - say 2March - 8 March – to finalize decisions on methodology and decide on a plan for data analysis

Before and during Week 7 - say March 15-22 – to discuss the outcome of the project, interpret the findings and agree on the best method of dissemination of the information

(depending on circumstances, you could also partly give input in online comment boards instead of meeting in person if you do not have time or health for it; students are responsible for posting questions for you then)


I am adding other practical and ethical considerations below, but in essence this is the long and short of it. I can also skype about this. Let me know if this feels manageable, and if not know there is always a way out, see the practical considerations 1 and 2 below. If you feel working on your own with a team would be too demanding, one option is also to be part of a bigger team (we have some UvA students with various types of disabilities willing to participate) which does more general research on the extent to which different forms of disabilities are accommodated (across different culture, across academic or work environments, etc.)


Let me know what you think,

Ileana

1. If you feel free at ANY point to say no, withdraw, or lower your input in the project; even if it’s just for the reason of losing interest in the project, or not having time to deal with it anymore. This will have no negative impact on students or their projects - the course is flexible enough that they can even write up their failure to conduct a participatory project as a final report (in fact, such failures are even published in academic literature, because in participatory research everything is an opportunity to learn, failure more so than success)
2. delays and practical issues, on your end or theirs, can be handled as the course has a fairly flexible structure; so this must never turn into a scheduling pressure on you to meet their deadlines; they work around your schedule and we the teachers work around theirs AND yours.
3. for now I am creating a mailing list for all co-creators that are willing to be contacted by our students. We’re not yet sure exactly how many students/teams there will be, what research interests they will have and who they will end up contacting. So it is not a guarantee at this point that they will reach out to you, but it is likely they will.

WOULD ANYBODY LIKE TO TAKE THIS ON IN MY PLACE?
I THINK THERE ARE FOLK ON THIS FORUM FAR BETTER SUITED TO TAKE THIS ON.

IF NOT, COULD SOMEONE WORK ALONGSIDE WITH ME? HELP WITH PROVIDING READING MATERIAL? RESOURCES? JOIN WITH ME IN INTERVIEWS?

 

Here's the link (again) to the course:
Participatory Action in Research and Education

@adambeyoncelowe
You would absolutely nail it!
You tick all the boxes!

 

I was so hoping for a response like this. Thank you @Hutan !!
I think this is a great idea.

I will take this on if I have to ... but I still think I would be in above my head.

Two options:
A very knowlegeable person (better suited that me!)
or
A small team of folk who between them have a wealth of experience.

 

Things Ileana and I have talked about over the years which piqued her interest:

1. Eminence over evidence
How a powerful group of lobbyists managed to position themselves at the heart of ME/CFS research and hijack the agenda. How ME/CFS was reframed as a psycho-social (psychosomatic) ilness.
(Something similar has been true in autism apparently.)
2. How this group gobbles up research money even though what they purport has been questioned and even refuted on many occasions
(Again, same in autism.)
3. The PACE Trial ... and all its shorcomings. She has been particularly shocked by this.
So in general, poor research practice having real world negative consequences.
And as a researcher herself, Ileana knows how much pressure there is to publish significant results ... and indeed, just to publish (anything at all) in order to stay relevant.
4. The new NICE Guidelines which included patient scientists and put patient experience at the centre ... and thus overturning the old guidelines which were harmful
5. How there is no yellow card scheme (or an equivalent) for psychological interventions. So the fact that folk have been harmed by GET but have no formal way of reporting it.
6. How ME/CFS has been (at least in part), ignored because it affects more females than males
7. Arrogance in the medical profession leading to dismissal of serious problems.

On the personal level, she's always been interested in how this has affected me.

1. Normal life cuts me out. It makes no mitigations for me to help me to participate
2. MASKING
We've had LONG discussions on this!
How I have to pretend to be well in order to not be completely isolated and thus get something out of in life.
3. How this long term masking has taken its toll on my identity and psychology
(Again, the same is true in autism)
4. How I have spent a good proportion of time internalising the toxic narrative that the BPS paradigm espouses.
Questioning myself. Downplaying the serious consequences of having such a devastating and life-changing disease.
5. Downplaying suffering

... and indeed, how the wrong information about our disease has led to hostility towards us from wider society and social structures.

 

Ileana is also interested in how such harmful practices affect
women
minorities
neuro-diverse folk
LGBTQ+ folk

She is well aware of how quickly a person's real complaints can by circumvented if that person is a little different from 'the norm'.

I think that this research project would like to look into this aspect also.

 

Seems like you have an excellent grasp of all the main issues . If you take this on you will have to be very firm with the students about how much time you can give and hopefully get enough rest.

 

What an exciting project thanks for sharing this with us all!

 

Dr. Grama is aware of what you bring to the table re. topics/knowledge (she trust your imput), asked you (she trusts your imput), gives great facilitation for you to be able to do it (low treshold, no-fail situation), and made the effort to lay it all out for you (which shows to me that after considering you she'd really like you on board) - I understand it feels scary, but I'd say you've got this.

The list of discussed topics shows you have a good grasp on what major topics are, and given the requirements I'd say you already have everything it takes to do this, if you'd like to.

Reading the email, it's the students who''ll have to do all the work, your job would just be to basically "steer & comment". You don't have to provide every bit of reading material, students have to find it themselves, it's going to be their research question and project. (And if you need anything on a specific topic, S4ME and other online communities will probably provide that in a jiffy for you.) The aim of the course is that the students learn how to execute participatory research, so...why not let them practise on you?

If you'd take away the insecurity, just looking at the project, is this something you'd like to do? Something that makes you enthusiastic? Do you already have topics bubbling in your brain that might be interesting for students to explore? (That list seems an excellent starting point, you could PDF topics from it for the first meeting to brain storm with the students on research aims, so voilà, you're already on your way. )

Ileana said: "Let me know what you think" - have you discussed with her particular things you're insecure about so she can give you feedback on it? She knows this course best, and if you e.g. expect too much from yourself re. being a ME/CFS encyclopedia or expert on research procedures, she'd be able to quickly give clarity on that.

 

Yes, I find it encouraging that students are taught to do research with the people whose life/condition they are looking at as co-creators of legitimate knowledge in the way they describe. (Not cosmetic/box ticking, but actually about relevant needs and ethics etc.)

 

This has been SO HELPFUL. Thank you Arvo.

You're so right.
It does feel scary. I do feel insecure.
I (probably) do know more than I realise.

I am reasonably 'well' atm.
I have time. (I don't have a formal job.)
I would probably enjoy it and feel like I've helped to bring the field of ME/CFS forward and given us a voice: These students may potentially raise awareness in whatever roles they have in the future.

Most importantly ... I don't have to be a walking encyclopedia. (I always feel like I do.)

AND
I WILL NEED YOUR COLLECTIVE HELP ... for sure!

Getting the students involved in a forum discussion here, where they can ask questions and get links to resources, is a must. So @Hutan 's suggestion was much-appreciated. (Thanks!)
I can't do this without your (Science4ME) support.

 

Ileana did mention that it might be good for the student(s) to interview patient(s) directly.

This project will be based in Amsterdam, The Netherlands.

Later down the line, I might put out a call to our Dutch friends on here.

I am less aware of the ME/CFS scene over there. (I'm from the UK.)

 

Also, I think I'd struggle to facilitate any interviews with healthcare professionals. I tend to avoid them ... like the plague

 

I'm glad I was helpful.
(Extra because I struggle with language at the moment)

I would find this scary too, at least at first; Things are changing, but ME patients are listened to so little that being involved in such a project as co-creator might feel like you're carrying the high stakes of ME on your shoulders, that it depends on you to Get Things Right on This One Shot. I absolutely think you can do this, if you feel like doing this, and that you can do this by yourself, but I understand if you'd feel more secure with a co-creator partner or online backup so you're not doing this alone. (Also: great for soundboarding, discussing, and "braining" together instead of relying on one brain with cognitive dysfunction.)

You have S4ME and an online community of ME patients at your disposal for back-up (to use as a sounding board, ask questions, find resources if necessary), but I would not be surprised if in practise you would depend less on it than you'd think, because you've got it covered.

Looking at the course description and the email, I think it is probably important you not forget 4 things:

1. This concerns a small, short practise project for people who have just learned this stuff
2. This is not centered on ME, but on these students practising to apply the PAR principles they've learned the weeks before
3. You should not be doing any of the actual work
4. Don't bend over backwards to accomodate these students: the point is that they accomodate their project to you, otherwise they won't learn to do that.

Because I think this might help take some of the pressure (and scaryness) off.


You'd have to see what your team is like in practise, but it could very well be that your team members have hardly any, or even zero, knowledge of ME (or know only a teeny bit which is wrong). I get the impression you feel like you should be prepared for an Olympic swimming event while to me this looks like a first practise lap in the pool after just having learned the theoretical basics of the breaststroke. Also, education is layered: they will not walk away from this Knowing All The Things in one go - but they will walk away from it knowing a bit more than when they started, and maybe even curious to learn further.
So don't worry about having to provide them with everything there is to know about ME politics, pitfalls and prejudices, I would guess that what is necessary to know will come up quite naturally. For starters, they'll ask you specific questions.
(Also remember: there will be a lot of stuff, all these basics, that are an open door for you, but will probably be new to them. I saw on your bio that you have three decades of lived experience with ME under your belt; compared to the students you already are an encyclopedia, even if you don't have to be.)

They have to practise formulating a research question/aim in collaboration with you. (I find this really great, because you're working together to see where their field and interests can serve to help improve lives of ME patients, to find where the fruitful connection points lie.) Here again it might be that you need to steer in ways that seems totally obvious to you, but not yet to them.

Also, given the type of course it is, your individual team colleagues might feel a bit insecure about not getting it right as well.


I do think that you really need to discuss some things with dr Grama. We can read the course page and email here and talk about the impression we get from it, but we are not her, this is her course, and she is best suited to discuss how you feel about this. (Also, if you feel insecure because it feels like high stakes re. ME, then that is already interesting feedback to give.)
And particularly because this is a university course, I don't know if she would want you to recruit a replacement co-creator in the wild. I think it's best if you ask her first if that is ok to do if you'd decline, or if you may find a co-creator partner for your team this way.
(Dr Grama already suggested that you could be part of a bigger team on disability if you don't want to do this by yourself, but you could suggest to try and find a partner first in the next week/two weeks if you'd prefer to co-create a mini-project on ME, just not alone.)

 

As the practise research project will be based on your priorities and values, then it makes sense that you would end up directing your team members to this place as well, as you value this place as a knowledge hub. E.g. if they have questions about particular matters that you think should be answered by not just you.

I'd only say to be careful that this choice does not stem from your insecurity to do this yourself and actually indirectly places the co-creatorship at the forum: for this education situation, where the students must work with an individual/individuals to learn their course in practise, that might be inappropriate.
(edited to add: to be sure, you could again ask dr Grama.)

So do most - another PAR research parameter for ME research! If it does come up, tell your team, educational!

Also *taps the sign*:

Let the team do that themselves if that would come up. And if they need directions to health care professionals, give the directions to where they can find them, but leave the initiation & direct contact etc. up to them. It's their research project.

 

Thank you Arvo, for taking the time to provide such a detailed and relevant response.
I feel very reassured.

You have raised some very good points and expanded my thinking a good deal.

I will be having a conversation with Dr. Grama within the next couple of days. I now have many more questions to ask her!
I will hopefully clarify the details.

Thank you for your support. It's very much-appreciated.

I'll be back when I know more.

 

Can anyone point me to some information on patient involvement in the design of the PACE Trial?
I know Action for ME were involved (why them?) and were responsible for agreeing to waive the use of actometers part way through.
Is there any info/links you could provide for me?

Similarly, any links which outline the involvement of patient scientists in the updated 2021 ME/CFS NICE Guidelines?
Is there a marked contrast between the patient involvement in the 2007 guidelines vs the new 2021 guidelines?
Is that (perhaps) one of the reasons why the new ones are so much better?

Feel free to inundate me!

 

I have no idea about the quality of these studies, but a sponsored Norwegian news article mentioned them. They are about patient involvement in healthcare. Maybe they are of use to you or the students?

(sammendrag = link to abstract)

Joachim Støren Sagen mfl.: Patient engagement in the development and delivery of healthcare services: a systematic scoping review. BMJ Open Qual, 2023. Sammendrag. Doi: 10.1136/bmjoq-2023-002309.

Joachim Sagen mfl.: Organisation, influence, and impact of patient advisory boards in rehabilitation institutions-an explorative cross-sectional study. BMC Musculoskelet Disord, 2022. Sammendrag. Doi: 10.1186/s12891-022-05678-y.

Andrew Garratt mfl.: The Public and Patient Engagement Evaluation Tool: forward-backwards translation and cultural adaption to Norwegian. BMC Musculoskelet Disord, 2022. Sammendrag. Doi: 10.1186/s12891-022-05514-3.

Joachim Støren Sagen mfl.: Patient Involvement in the Rehabilitation Process Is Associated with Improvement in Function and Goal Attainment: Results from an Explorative Longitudinal Study. J Clin Med, 2024. Sammendrag. Doi: 10.3390/jcm13020320.