Still to open How to make patients who aren't engaged in the patient community aware of studies recruiting?

[Saz94]

For the GWAS you will need to make it clear that scientists aren't going to "steal your genes"... a lot of people are very scared of giving their genetic material to research and what might be done with it. (This is totally based on misconceptions, of course.)

 

[MerryB]

I think that in case of cancer screenings people in the demographic age group at risk, get a notification to get tested and sometimes if they want to participate in a scientific study about this.

So maybe it's an option that GP's send a request to participate in the study to all patients in their registry that have a diagnosis of ME/CFS? Or would that be a violation of those people's privacy?

I got recruited into the UK ME/CFS Biobank that way. They asked my GP practice to send a letter out to the patients on their register with an ME/CFS diagnosis

But that was before GDPR - not sure whether they are still allowed to target patients in this way.

I wasn't engaged with the patient community at the time, so I was happy to hear about a study that I could participate in.

I think lots of ME patients would be happy to receive a letter invite from their GP surgery if GDPR would allow for this method, because most patients get told there's nothing much that can be done to help them. So being invited to help with scientific research offers something practical you can do towards a possible future medication or cure.

I think recruiting through primary care would also send the message that ME is important - important enough for scientists to want to sequence our genomes!

I know my GP, whose wife is a geneticist, would be supportive of the idea.

The only thing I don't know is whether that method of recruiting is still permitted under GDPR, but I expect the researchers would know, and the GP practices would know, so should be easy to find out.

 

[MerryB]

Good idea, to get a media doctor or doctors on board, who can interview Dr. Ponting, and a pwME, or put forward the info themselves if well versed.

Also maybe see if one of those BBC show that focus on new technologies etc. would do a feature? Like 'Click' or ... I want to say Panorama but I'm not sure whether that's the show I'm thinking of...

 

[Wendi]

As someone suggested definitely request funding for a research coordinator. Either contact your local hospital/research facility or ME/CFS hospital specialist. Hospital have R&D facility and then look at PIC sites both in hospital and community settings.
Send communications out to hospital /nhs staff who could promote/inform about studies.