Involvement of the clinical community

…I summarise here, per @Alberto 's request, a conversation I was having with @sociotechnicalmike about the best strategy to involve the medical community in our project.

In facts, Mike asked whether any clinical involvement is envisaged for the project, and specified that his concern is <<with the “politics” of a “revolutionary” proposal>>. Which is a very good point, we believe.

To make a long story short, I had thought of this and my “plan” would have been an involvement of certain parts of the medical/clinical stakeholders (i.e. academics and societies) at the stages of “making sense” (and evaluation).

However, I feel they shouldn’t be in the driving seat. We are not aiming at medicalising everyday life and care hacks… and doctors may contribute good criticisms, but are normally far away from these practices.

We would like to hear from you as well on this matter. What are your thoughts?

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“Certain parts”?

I would need to know more about this. You seem to imply there is a tension in the clinical community. Some forces push to medicalise the human condition; others push back.

If this is true, I think this needs to be in the proposal. We need to show we have a good knowledge of that debate, and based on our analysis of it we decide they should not be in the driver’s seat.

I think Marco will concur: building shared intention, partnership and common vision in the clinical/social care community is fraught with challenge and difficulty at many levels and as I have remarked before, this is a revolutionary project. Clinical land is very status conscious and hierarchical, social care is often a battlefield or disaster area and the process of negotiating entry and of engagement is one that requires much care and sensitivity.

It is the experience of these challenges that led me to suggest a “WP0” in which we reflect together on our practice in the project and maintain our evolving representation of the “architecture”. I will circulate more material over the weekend not on the basis that I think it ought to be included in the proposal – that is up to the collective. But I do want to make our experience clear so that we have as well informed a picture of what we might be getting ourselves into as possible!

 More over the weekend…



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Out of my depth

Ok, I am out of my depth here. The best I can do is trust @markomanka and @sociotechnicalmike to integrate the clinical community enough, but not too much, and with the appropriate role. By the way, I do not recommend to cast FutureCare as revolutionary. This is innovation, so we can play the “nothing to see here, guys, just a research project” card. Then the results will speak for themselves, no point in being a priori confrontational with the clinicals, even if we privately think many of them are a bit entrenched.

WP0 sounds like a great idea. @melancon had independently proposed something along the same lines, so it all fits in nicely. It is also a natural WP for the consortium leader.

The Trojan horse approach is (almost always) the correct one in this area Alberto. I think there are two issues concerning the involvement of forward looking and receptive practitioners: firstly as a source of insight into their worlds and as a continuing reality check in the sense making and secondly, to nurture some champions who can interpret/explain to their communities as part of the dissemination. We have some well tried and tested tools to support this sort of activity and I will circulate some material over the week end.

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Reframing issues

I had a conversation with a man who is involved in trying to secure rights to care/health insurance for refugees in Germany. It is not going very well, the Conservative/Christian government is trying to stem flow of voter base towards Pegida by appearing tough on all things to do with immigration and so no one is even willing to entertain a humanitarian stance. During our conversation we came into the idea that perhaps the work lies in getting a number of these organisations/activists within the medical communities to be shaping a radically different agenda around health that aligns the interests of their constituents and that of the “majority” population. I see the possibility to build an interesting scene.

I don’t get it

@Nadia, could you explain?

Robin’s comment about climate change and social justice activism

… read the comment here. The social justice/anti-racism activist does not get behind the climate change issue until he/she sees a framing of the issue which connects his/her concerns with the threat posed by climate change. In fact this was the case with the recent Net Neutrality win in the US. You had a broad coalition of activists inlcuding a big blacklivesmatter contingent getting behind the agenda because someone connected the dots: poorer communities will be disadvantaged by telcos being able to discriminate packets. etc. You see? So we reach out to groups currently fighting for refugee and or disability rights, especially where you have doctors/medical community involved in trying to affect change. Get them to help see and connect dots between what we are pushing, and what they care about and they will get behind the agenda. So we dont need entire medical community, just subsets involved in different issues.

Preparing the Proposal

Time is short and there is a lot to do. At this stage I think it is more important that we generate content which can be fitted into the standard proposal structure and I suggest that we only produce content to be added or propose changes to existing content. I don’t think any of us have time to consider analysis and comment. This does not mean that saying “I like this” or “I don’t like that” is not useful and I hope none of us will get upset. Of course we continue the discussion here. But the important thing is to generate content.

As we progress can I suggest we generate a  series of section documents and find some way of booking them in and out so that we don’t get two or more people simultaneously producing different versions which then need to be reconciled. Each section needs a named overall editor who will be responsible for issuing pleas for specific missing input. Only at the latter stages do we assemble a single overall document for copy editing and polishing it will get too big and unwieldy.

I do not know you guys well enough to suggest an allocations but clearly the project management stuff is with me and I have produced and uploaded some initial draft material as docx.

Regarding the Management Work Package I think the consequence of how I have written the management approach is that, if you accept it, we could incorporate the management, governance and reflection into that package and that it becomes more than just the standard project management WP. Think about this, it could be dangerous or it could be an asset: the job here is to get funding rather than try to do the job itself so what sounds like the right sell?. The alternative is to combine governance and reflection with communications: ether is a good approach.

Regarding the facilitation of reflection, I am offering myself as facilitator. If we get funded then you can easily oust me as soon as you think fit. :wink:

Personally I am on the road from Thursday 19 to Thursday 26 March and in intermittent contact over the net (Milano then Dossena Bergamo: and no it is not a holiday, it will be very hard work!). At this stage, and in general, think the best contribution I can make is in the generation of content which you guys can use, abuse or reject (I’m not precious about this. ) You will get a flavour of my style from the first set of material I have circulated. I have a failing that sometimes I make by critique of the often naive and sometimes downright wrong and dangerous assertions in the Commissions programme material too obvious and an approach that says “you don’t want to do that you want to do this. We made that mistake in the 1980s! and again in the ‘90s!!!” is not usually a good one for convincing evaluators who are oppressed by too many proposals and are looking for any excuse to reject as many as possible as soon as possible. (I know, I’ve been there many times!)

There is more to defining the next stage but I hope this is a start.

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Organizing my head

@sociotechnicalmike, people might find it difficult to place your comment in the context of this thread on involving the clinical community. We had proposed an allocation of tasks in this thread – needs update now with KITE and WP0. The method was more or less what you propose – but please, do go ahead and re-allocate away, that was a month ago and the group has been taking a more defined shape now. Also, I think we need a clear signoff of all section editors. I suggest you open a new thread with an up-to-date proposal of writing allocation; and that we use the next call to get signoff and make sure we all understand what’s expected by us, when.

In terms of WP0, I would go for it. I might even make some argument for it – I think it can be argued as an asset, if we make it into an open, semi-public space accessed not only by consortium partners but also by various people and orgs we work with (what I think of as the FutureCare community). But ultimately, it has to work for you and KITE. And of course you would make the ideal facilitator, both in terms of experience and role.

Commenting your material on the Google Drive.

Noted Alberto (and thanks): excuse the newby!

But this comment is relevant to the original issue, I think…

I think there is an important issue of internal, semi-public and public conversations here. There are some aspects of care which are, and must remain, private and privileged and this applies to our care of each other in the consortium as well as the health and social care which we are trying to support in the community. There are many (in fact most) aspects of what is being proposed here that should and must be done in public and in common. One of the things we need to continually reflect upon is the nature and applications of these distinctions as they emerge and apply to our experience of the work. I did say that participation in the reflection would be as inclusive and open as practicable.

But saying we operate under the principle of openness and inclusion is one thing, letting it all hang out with enthusiastic naivety is another (pardon my exaggeration and reduction here). Our experience is that some of the people we need to include, who are associated with health and social care, are extremely, and rightly sensitive to issues of privacy and confidentiality and we will have to convince them that we understand and respect these sensitivities and also that our openness, when appropriately governed, delivers benefits to them.

I know we are agreeing violently here and the point of the response and the exchange is in making things clear and explicit so that we can communicate them effectively.


Diversity, really

Ok, we agree violently (great expression, btw). The open part in this case responded to an appreciation of diversity rather than transparency. In “my other CAPS project” (now almost over), I just helped organize this small event, back-to-back with a consortium meeting. It was hugely productive, as people from different professional backgrounds got to do some common work.

You resonate fantastically…

The two of you resonate so fantastically, I am left with nothing to add to the conversation. I love where this is leading, and I undersign the "meta"WP0.