UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

Yup ☺️

 

Good point. Generally speaking it would be crucial to mobilize the organizations (except that weird one that keeps promoting BPS BS, Sheffield?), support groups and volunteers. For many patients this will be the only way to know about the study and they can play a huge role in maximizing returns.

 

If they apologise for the way they've behaved, then maybe that's a sign that they're not as despicable as they seem. I don't think that's likely while Fiona Fox is in charge.

 

As I understand it, should the study be funded, then the funders are likely to use their normal communication channels to distribute the news, I.e. via the SMC. This likely fact would not stop us, the research team, from distributing the news ourselves with our own messaging via our own channels, which would include both AfME's and the MEA's links to the press.

Obviously with this project, publicity will provide a key role, and it's undeniable that the SMC could play a part. My concern, that I'm sure all of you will share, is how the SMC might frame the story - I'm not sure how much influence I can have on that but I will attempt to highlight to the funders that should the SMC follow their normal line with anything ME related, then it will have a negative impact on patients wanting to take part. An argument could be made for the SMC not be involved at all, but then we wouldn't reach as many potential participants as we could have done.

 

I can't claim any insider knowledge in that regard, just the recognition that the SMC has made themselves very useful to the funders previously, so it's highly likely that they will be used again.

 

Questionnaire conundrum

Good discussion on the merits and pitfalls of optional questionnaires

I would add to that extensive experience/results from non-profit marketing, which shows that giving people more choices/options reduces response rate - effectively people are more likely to be put off/confused and end up doing nothing at all.

I think @rvallee has the right idea:

I would limit additional Qs, but the key thing, in my view, is to focus on people fully joining the study by returning a saliva sample before offering the chance to do other things. Personally, I like the idea of giving people the chance to answer a few questionnaires (if there is agreement on which these should be). It increases the value of the resulting dataset (which will be made available to researchers), but shouldn't affect recruitment at all.

I suspect that patients would be happy to do this. But we could test this on a subgroup, to see if mentioning to people there will be the chance to answer further Qs after spit return affects response rates.

Yes, but see above - if it doesn't hurt recruitment, and there is agreement on which Qs to ask, why not ask more questions as part of this study?

Yup. Especially the bit in bold.

Sub-groups

One for @Chris Ponting, but my understanding is that it won't make much difference. If there are 5 sub-groups it will reduce the statistical power to detect (you effectively now have 5 smaller studies). More to the point, we don't know if there are any sub-groups. A GWAS might help detect them eg if the DNA differences cluster together, eg a group of people who have mitochondrial variants separate from a group who have immune variants (though I doubt it would ever be that clean).

Fatigue question

Agreed. I can't remember where that question originated - Fukuda criteria, I think - but wherever it was I remember reading that a member of the group that came up with the Q clarified it. He said the Q was meant to exclude people who were working 80 hours a week or training too hard - but who got back to normal when they rested appropriately. I actually think "fatigability" might be a more useful term, relating to how quickly/easily we get tired - but that's getting well off thread.

 

If explaining the problems with the way the SMC has promoted misinformation and prejudice, you could also ask if this is really the sort of organisation that should be receiving funding from the MRC?

From what we've seen of the MRC, I rather doubt that they'd bother checking whether concerns about the SMC spin were valid though.

 

What funding is that?

 

The Medical Research Council is currently listed in the £10,000 – £19,999 section:

https://www.sciencemediacentre.org/about-us/funding/

 

Ah, I missed that earlier when I checked that page, thanks.

I'm pretty sure that my message wouldn't get to the person(s) who would decide on that.

It doesn't matter if the communities concerns are valid or not, to be honest, and I won't be asking the MRC to check them. As long as the relevant people within the MRC understand that any messaging from the SMC about the study needs to be presented in a way that will be acceptable to the community, so that the MRC, should they choose to fund this study, don't waste their money by the community refusing to take part then my job would be done.

 

Often the SMC have regurgitated press releases. The problem has often been that they have regurgitated those press releases written by Sharpe et al.

So maybe care could be taken in the wording of the press release?

Of course, at times they have added their 'specialists' opinions, which have been highly questionable and potentially damaging. Might not have much control over that.

But maybe a well worded press release might help to increase the chances of any SMC coverage not being too terrible? (She says, hopefully ).

 

I think there's a good chance they will get involved no matter what, if only because science journalists will turn to them for guidance. It may be good to pre-empt, but I think they'll do whatever they want with it regardless.

 

I wouldn't be too worried about the SMC covering the project. The function of the SMC is to spread the word about 'good science' to the masses. Anything funded by the MRC is 'good science', perhaps partly because the MRC is paying. So any nay saying experts will have to say 'Oh yes well this is in fact a brilliant idea, in fact we had thought it was a brilliant idea years ago, can't think why nobody took us up on it, and that Ponting fellow seems to wash behind his ears alright so, yes, jolly good show.'

 

So to shift the conversation away from the slightly depressing topic of the SMC, here's an idea.

I've been thinking about the importance of visual impact in helping to publicise new projects. It sounds as if recruitment of interested patients is standing at around the 5,000 mark, which is great – but if it'd be allowable, I wonder if it'd be worth obtaining and plotting our postcodes onto a map of the UK, to show coverage in graphic form?

This could be useful for a second publicity push, scheduled for some time after the first. Part of its strength is in making underrepresented areas of the country visible, which in turn would offer an opportunity to put out messages saying (for example), 'Calling all ME patients in south Wales!'. It might remind people that they know someone in such an area and prompt them to get in touch, or encourage a bit of competition between regional ME groups.

There are free tools available to do this kind of mapping. Some are listed here:

https://dataingovernment.blog.gov.uk/2016/03/30/free-tools-to-quickly-show-postcode-data-on-a-map/

 

Annoyingly, although I had sent inks through to the person who runs my local group, they didn't include anything about it in their newsletter. Though they managed to include info about an expensive product one person found useful.

I have contacted again and requested the information be shared to the membership. I also found contact details for another group I had some dealings with in the past and passed the information on to them too.

I would have thought both groups would have been all over this and don't understand why they aren't. Unless it's reluctance born by being bitten on the behind before by (BPS) researchers.

 

Thanks for your efforts