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“In this study we find people with broken legs walk less, perhaps we should look at encouraging walking as a novel treatment avenue for broken bones?”

Or run one! What is to stop us doing it ourselves? Data protection/privacy is the main hurdle I think. But designing and even analysing anonymised data are all skills we posses. Patients/we could do some of it ourselves for now? If we agree on something and start tracking our own data. Funcap...

Sure, they’re commonly used. But there is little evidence we understand what long covid is or that animal models are particular useful for transferring these ideas between humans and animals. I’m not discounting their use in understanding disease but I am extremely sceptical of the way in which...

Hamsters… These hamsters may well have something but how do we know they have long covid if we can’t even define what long covid is in humans?

Oh yeah, the comms is awful. But political operations are gonna spin, they can’t help themselves. We’re speaking about a whole group of people here, there’s going to be a range from the wanting to improve things end to the wanting to wash their hands (or at least being completely inept) end.

Could be. I’m confident there are at least some involved, including in government, who want to improve things. I’m less confident that they are up to the scale of the task, but in my mind that is different from wanting to wash their hands of a problem. And I’m very glad we have someone as...

Thanks Adrian. This is all a very useful perspective.

I wonder if there is a good regional distribution of people, if questions outside of our health would be possible. Like experiences of health and social care support. If that could be geographically mapped then we could measure performance of ICBs and local authorities. Assess how good any...

I have mixed feelings on what I’ve seen so far Positive take If this is the start of something there are positive signs. Recognition that there are problems and lack of understanding and talk of foundations shows a desire to improve things and seems to indicate this is only the start of a...

Quite impressive levels of administrative sloppiness. Hardly the most important part of this but it does seem indicative Source

I think that gets too complicated and difficult to measure. That’s one problem with these questionnaires, complexity as a result of trying to design for every possible ‘what if’. How would you measure activity? Most methods seem equally subjective and open to issues. Open to suggestions though...

Yes, very much that. Is there a statistically significant benefit to patients of the intervention. All the other complexities in these questionnaires seem to try to get fine grained or subtle detail or discern if changes are present in different areas or in different groups of people occur or...

Lots of really useful and insightful feedback. Thank you everyone. So maybe something like… - Pick 3 activity descriptors that you feel best describe your current limitations and level of activity, you can choose from FUNCAP55 or write your own. Try to pick a range which represents you best...

Me too. But I’ve not got any experience with deeper analysis. Although know its used in quite a few areas. Definitely interesting and could be good when there is lots of data from different sources to analyse too. It would be a lot more work to administer than what I was thinking, which was...

An interesting idea. Sentiment analysis of free form descriptions by people of how they are?

The discussion section of the paper is really interesting and very relevant. I’d quote it but copying from the png/pdf is giving terrible formatting issues which are a faff for me to clean up atm.

Some questions I have, and am unsure of the answers, would appreciate feedback - Would picking 5 descriptors from Funcap 55 be easier/better than completely patient created descriptors or are these too restrictive? - Should he question be can you do these things without significant negative...

Oh I’ve missed that thanks. And I do like what they’re trying to capture, their descriptors are good. But I like the idea of making it even more lightweight. The studies I’ve found best have been a very short weekly questionnaires, I can keep track of a few data points over a week and generally...

Whoops! Sorry. Hadn’t got far into that thread yet. Sorry for the duplication, hopefully it’s a sign of a useful idea for it to have evolved in two different habitats independently!

The problem is FUNCAP is still long, it’s 55 questions and has a 6 point scale. There are a bunch of things which are not applicable so will just get the same answer, it’s trying to cover too much and is too complex. In his proposal, the question is simply how do we measure if a patient...