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Post by Deleted on Sept 8, 2015 22:57:27 GMT
Can I shout bollox on the figures for the diagnosis of women? TRUE - boys are being preferentially diagnosed in a ratio of somewhere in the region of 75/25*. That's hyperactivity for you - it annoys teachers. For adults the UK appears to be at parity, or even beyond that, because there is a lot of catching up to do. If you aint diagnosed as a child everyone has problems being believed. Children and adults combined might still favour males but adults alone is a different story - that 75/25 split is a big number to overtake. Another gender bollox thing - my inbox is not inundated with research into men with ADHD. Kids? Yes. We know that has gender bias. Parents? Yes. Gender specified adults? Not really. There has been a little work on the medication/hormone interaction but even that is sketchy. Here's a thing - why don't we get the adult experience sorted before we start dividing it up into ever smaller interest groups? My conclusion - it looks like bloody PhD students are skewing everything with their antics ie the need to have a discrete research project AKA bollox 'they'll buy this rubbish' research that will land them the letters after their name that they crave. And profs (middling ones) who need papers to publish because its expected of them. Colour me bloody cynical. *All figures pulled out of my unchecked memory and I lose track of when I read it. The figures are shifting year on year and, you'll scarcely credit it, appear to be moving to an egalitarian point. More inattentive kids (hello girls) are being diagnosed, probably due to parent awareness, and adult women are moving ahead. Go look it up (I can't be arsed to do it again - I'm too busy fire fighting what's in front of me but I can see the gender of the people I'm meeting).
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Post by JJ on Sept 9, 2015 0:03:07 GMT
^^^^ all that ^^^^
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Post by Deleted on Sept 9, 2015 8:13:49 GMT
@planetdave, you stayed out of this for so long. I like to think that you watched the Eurythmics video and were inspired by Dave Stewart's cameo part where he gets to riff along in the background from about 2.36 onwards.
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Post by Deleted on Sept 9, 2015 13:04:52 GMT
A quick update to say that I have received an acknowledgement of my complaint and an assurance that the matter will be investigated by the Director of Research at the OU. They acknowledged both the concerns around research conduct and data security, so I feel happier that the concerns have finally been heard by someone with authority and a sense of responsibility.
I think we can reasonably expect not to hear more from the individuals involved at this stage, as they will probably be subject to internal requirements to "say nowt", and that's fair enough.
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Post by Deleted on Sept 9, 2015 15:06:53 GMT
According to reports Dave Stewart is a nailed on ADHDer and I was always a Eurythmics fan. As for intervening in the topic - you've read my opinion on research. And gender divisive agenda (hate it with a passion - united front only). Research has been a hot topic behind the scenes (yes - we hide stuff from you) and Roland has reiterated our view AADD-UK view on researchAdmin have a 'cabinet' philosophy - we take a joint stance even if we don't agree 100% - it's in the nature of committees. I don't get on well with 'low level' research - my inbox is besieged with people asking me to spam my mailing list for their benefit (never happens) so they can scrape up an unrepresentatively small cohort to manipulate their pet hypothesis onto. If it was UCL or Nottingham (and maybe a few others) I'd be all ears because that's where I know the powerhouses of UK ADHD research live. But so often I just hear buzzwords and it ires me - especially when words like 'experience' are used. I like hard science. Good, repeatable stuff. I had to study statistics for both industry and psychology so have a healthy cynicism for it's ability to be manipulated by the questioner's bias. Yes - curmudgeonly.
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Post by Deleted on Sept 9, 2015 16:45:20 GMT
I appreciate all your points @planetdave. I wasn't having a pop at you, it was just that the Dave/Dave visual was too good not to share! Personally, I think that the issue of "women with ADHD" is being seized upon in current research at least partly because of (1) the increasing recognition of ADHD-PI; and (2) the changes to the diagnostic criteria within DSM-V; which together are being viewed, by those critical of psychiatry, as representing a cynical expansion of the pharmaceutical industry into a previously unreached "market". This is an ongoing topic of discussion within the Critical Psychiatry movement and is frequently discussed, eg, on the Mad in America blog in the USA, and by folk like Joanna Moncrieff and Sam Timini et al in the UK. I don't mind other people holding critical views and exploring them with service users, but I do expect honesty and disclosure from researchers when I am being asked to be a subject of any research project. In the same way that the Critical Psychiatry Network emphasises the need for patients to be provided with sufficient information to give fully informed consent to drug treatment, I expect to to be provided with all the information I need to give fully informed consent as a human research participant. And there lies the rub in respect of this particular project. As JJ highlighted on her separate thread, Alison Davies, the OP, started out as an educator and has previously published her opinion that ADHD diagnosis in children represents an extreme medicalisation of childhood. Given that she is very skeptical of the medical "truth" of ADHD (her scare quotes, not mine), I don't think her reluctance to answer our questions here can be put down to mere oversight or inexperience. My strong suspicion is that Alison wants to make a name for herself by shoe-horning our members' stories into a narrative that she has already constructed, and I'm not playing that game. I want to be clear: I'm not saying that I think she deliberately set out to deceive us into participation. I suspect that she has simply never given very much thought to us as being people just like her, rather than the hypothetical tragic-victims-of-the-pharmaceutical-industry that we seem to have become in a certain corner of the academic world. I hope that this thread will not put off genuine, disciplined and self-reflective researchers who may want to use this forum in future to recruit participants for other projects. Personally, I am happy that the Critical Psychiatry Network is alive and kicking, and I am glad that the pharmaceutical industry is being held to account. I think there is a lot of scope for intelligent, respectful discussion here in the middle, as it were. But research does have to be handled in a respectful and honest way.
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Post by Deleted on Sept 9, 2015 16:58:11 GMT
Along with a report of my concerns I have also sent to the Director of Research at the OU a copy of this report I found from the Centre for Public Engagement at the University of Bath, as an example of one of the many positive ways that researchers can engage with the public in projects of mutual benefit. www.bath.ac.uk/marketing/public-engagement/case-studies/exemplar-activities/adhd/www.bath.ac.uk/marketing/public-engagement/assets/ADHD_Case_study.pdfIt's a case study undertaken by a researcher new to working with adults with ADHD, in which he reflects on the way he engaged with members of the Bristol Adult ADHD Support Group to undertake a project on behalf of the Bath Business School. You can see from reading the case study that the researcher was clearly in very unfamiliar territory at the start of the project but that he seems to have approached the whole task with respect for his participants and an openness to learn as he went along, employing the use of a "critical friend" from outside his own academic discipline to help him reflect productively on his learning. Although the project was modest, I'd say it represents a really good and responsible start to a very interesting topic. And it reflects very well on Bath University and the Bristol Adult ADHD Group.
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Post by Deleted on Oct 9, 2015 6:08:08 GMT
Thank you for all your work and posts on this jj and @pelargonium Having read the links I'm also deeply concerned about the ethics of those involved in this research and I really appreciate you both looking out for everyone. If you (or anyone else for that matter) have concerns about the ethics of the proposed research, demand to see the ethical approval documents. Every research of this kind has to abide by strict ethical regulations and has to show a deep exploration of all ethical issues at play during the research. If I were the researcher, acknowledging a critical hypothesis and the fact that participants (women with ADHD) will not readily accept that position, would top my list of ethical concerns even before privacy issues. Not giving full disclosure about this aspect is deeply unethical and I very much doubt any ethical committee would agree with misleading participants during the initial phase by not telling them the researchers are working from a critical hypothesis. Moreover, I find it suspect that Alison Davies came to these boards without creating an account. This makes her unapproachable through the PM system and simply hinders a constructive interaction with the potential patient group. So I agree, be very critical about this and remove the thread if the researchers fail to inform correctly and fully about their intended research.
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Post by Deleted on Oct 9, 2015 9:23:55 GMT
I agree that the ethical concerns are paramount.
I hope the thread wont be removed though. As it stands, it serves as a warning and provides context to the research that will probably be carried out anyway.
In case Alison does ask for it to be deleted, I have saved screenshots and full text copies for the purpose of communicating with the OU and the BA/Leverhulme Trust about my concerns.
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