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

MSEsperanza said:
In skimming-only mode so don't know whether this has been suggested:

Will participants be offered support with mailing the samples?

Could be relevant for pwME that have no carers or only tiny support.

Perhaps local support groups could organize collection of samples.

I think it could motivate people to participate in the study if it were announced that said support will be offered where possible.

ETA: This occured to me only after I had filled in the form where I suggested to involve any possible health care professionals who are likely to see pwME, also in collecting the samples for mailing.
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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.
 
NelliePledge said:
Has anyone actually said that SMC are getting involved or is it just speculation?
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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.
 
Ok thanks Andy. Hopefully you and the research team will be listened to by the funders. I hadn’t understood the extent of SMC relationship with them.

Not an easy situation but if looked at with optimism possibly an opportunity to bring some kind of change. At the very least the funders will be under no illusion as to the SMC having its own agenda on ME. I guess there’s a possibility that SMC will see that agenda as no longer in their interest to pursue.

Or not. Only time will tell.
 
Questionnaire conundrum

Good discussion on the merits and pitfalls of optional questionnaires

Andy said:
While we are exploring what options are available to us, we are keeping in mind that the burden for participating in the study should be as light as is possible, in order to allow as many patients as possible to take part. Whatever platform we use in the end should make things as easy as possible, not add unnecessary tasks.
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Jonathan Edwards said:
[would extra Qs be an issue]Yep, I think very definitely from my own little focus group investigatio
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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:
rvallee said:
one way of maximizing questionnaire returns would be make it a two-step process that uses the spit-and-post test as the required step and allows for near indefinite, as practical as possible, participation in the second step of however many questionnaires people are able to answer
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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.

Andy said:
So I will be looking for us to use the fewest questionnaires required for the GWAS to be successful but with the above action we will be making it easier for anybody who wishes to follow-on with any future study, whether that be questionnaire based or not.
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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?

Ravn said:
If there are suitable extra questionnaires - and I don't know if that's the case or not - they could be presented as an optional, totally no commitment, entirely voluntary opportunity to participate in additional research. That way they wouldn't put off anybody but could maybe attract people who are keen to contribute to research but who don't otherwise have the possibility to do so because of location and houseboundness.
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Yup. Especially the bit in bold.

Sub-groups

MerryB said:
One big reason I suggested additional questionnaires was because ME is heterogeneous, there is a chance that it is not one genotype but several different ones, each comprised of a different cluster of SNPs?

And that lumping them all together in one 'having ME vs not having ME' phenotype analysis might not turn up (or might dilute) any statistical significance?
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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
Sarah94 said:
When I did the biobank questionnaire last year, there was a question like "do you have fatigue that is not relieved by rest?" I think this is not a good question because when I was less severe, I could feel okay if I rested a LOT
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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.
 
Andy said:
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.
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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.
 
Esther12 said:
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.
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What funding is that?
 
Esther12 said:
The Medical Research Council is currently listed in the £10,000 – £19,999 section:

https://www.sciencemediacentre.org/about-us/funding/
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Ah, I missed that earlier when I checked that page, thanks.

Esther12 said:
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?
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I'm pretty sure that my message wouldn't get to the person(s) who would decide on that.

Esther12 said:
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.
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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.
 
Andy said:
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.
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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 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/
 
I would expect there will definitely be desert areas if it’s mainly dependent on local groups because there are areas like mine where seemingly there isn’t any type of formal or informal grouping. A map like this could help me in trying to gain allies among the voluntary sector for setting up a group here by showing comparison in other areas. However it could just be that people here rely on national organisations instead.
 
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. :rolleyes:

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.
 
Invisible Woman said:
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. :rolleyes:

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.
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Thanks for your efforts :)
 
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