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Hi Isabel, That is a good point - I am sorry for bringing up University-based ethics when the discussion was in regards to NHS and NRES. I suspect that the others were all staying within the NHS / NRES context with their points. I have never put an ID-related project through NHS ethics. However, I have put another project through NHS ethics, on the topic of EEG in infants of mothers with depression/anxiety. This protocol was ultimately approved, but the process was decidedly more difficult and less logical than my experience with proposals at the University. So, I would guess that the problem with ID proposals to NHS is an interaction between process and lack of specific expertise on ID, as suggested by others. One thing I can further add is that the hospital-based ethics review in the USA is similarly difficult (obtuse?) relative to University-based ethics review. The belief of many researchers in the USA is that the hospital-based ethics review process is often impacted by personal interests, pet priorities, and a different understanding of the role and purpose of an ethics review committee, on behalf of those who typically sit on the committees, relative to University-based committees. Joe On Fri, Aug 1, 2014 at 1:43 PM, Isabel Clare <[log in to unmask]> wrote: > Dear All > Thanks for this interesting discussion. We seem to be talking about Univ > RECs and NRES in the same conversation. > As a member of the Psychology Research Ethics Committee for the Univ of > Cambridge, which reviews psychol, psych etc projects, our role is to > facilitate as far as possible. The turn round time is v quick too. > > My experience is that NRES, for people whom we wish to recruit through > the NHS, is much more searching. My experience has been mixed. I have > carried out some teaching for NRES members, in which one person said his > role was to prevent research with people with LD; and a chair of a > committee reviewing research involving people who lack capacity to consent > to take part in research asked about the point of asking them to > participate in interviews by experienced clinicians working with people > with LD. But we do seem to who have won the argument that amended > info,sheets and consent forms are acceptable, esp if developed with > people,with LD. > > Something we have found more taxing is the local authority's attempt to > say that people funded by social care should go through their ethics as > well as NRES. This is a committee whose membership is unknown and for which > there seems no appeals procedure. NRES of course covers LA as well as NHS. > In addition, a few individual service providers sometimes will not allow > their service users to participate despite going through all ethics and R > and D procedures, and without seeking the views of their service users. > We're trying to address this via their LA contracts. > > There are also issues where contracts with funders can't be signed until > we have NRES approval but NRES wants to know there is funding. > > It's all grist to the research experience! > Best wishes isabel > > > Sent from my iPad > > On 1 Aug 2014, at 14:53, "Joe McCleery" <[log in to unmask]> wrote: > > > I can second what Chris has said - although it is not without problems, > the University of Birmingham ethical review process was generally > reasonable for individuals with ID. For example, although they initially > expressed concerns about testing of nonverbal children in EEG studies, they > gave me a proper opportunity to explain the risk/benefit ratio and > successfully make the case. They also expressed concerns about physical > prompting strategies (for teaching, not aversives) in an intervention > study. But, again, they listened to a risk/benefit rationale and > considered the larger context of both the previous literature and the aims > of the research. > > Joe > > > > > > > > > > > On Fri, Aug 1, 2014 at 9:32 AM, Chris Oliver <[log in to unmask]> wrote: > >> All >> >> Just to share a different experience. We have submitted three or more >> applications in the last few years with varying levels of ethical concern. >> In each case only minor mods were required and the process was surprisingly >> straightforward once the endless forms were completed. In fact for one >> project (self-injury) I would have preferred greater scrutiny to reassure >> us that we had thought through all the ethical issues. If I remember >> correctly there was an ID psychiatrist on the panel for some of these and >> this helped and the discussions were an important opportunity to iron out >> any misunderstandings. >> >> Best wishes >> >> Chris >> >> *"The NHS will last as long as there are folk left with the faith to >> fight for it" Aneurin Bevan* >> >> Chris Oliver >> Professor of Neurodevelopmental Disorders >> Cerebra Centre for Neurodevelopmental Disorders >> School of Psychology >> University of Birmingham >> Birmingham >> B15 2TT >> UK >> >> 0121 414 4909 >> >> https://www.youtube.com/watch?v=cK16tSB113E#t=24 >> www.birmingham.ac.uk/cndd >> >> https://www.facebook.com/pages/The-Cerebra-Centre-for-Neurodevelopmental-Disorders/230197213724784?sk=wall >> >> >> >> On Fri, Aug 1, 2014 at 2:17 PM, Dr Neil Sinclair < >> [log in to unmask]> wrote: >> >>> Hi All >>> >>> >>> >>> Agree with all of Glyn’s comments as I was the other researcher on the >>> project she refers to- there was a previous application I put in as lead >>> researcher which also was rejected, and the delays added years to the >>> project. >>> >>> >>> >>> Kind regards >>> >>> >>> >>> Neil >>> >>> >>> >>> >>> >>> Neil Sinclair PhD >>> >>> Consultant Clinical Psychologist >>> >>> Sinclair-Strong Consultants Ltd. >>> >>> >>> >>> <image001.jpg> <image002.jpg> >>> >>> >>> >>> ( 01732 871018 >>> >>> <image003.jpg> *0*7753985675 >>> >>> 7 08000488718 >>> >>> : www.sinclairstrong.co.uk >>> 8 [log in to unmask] >>> * *Building 70 Churchill Square Kings Hill West Malling Kent ME19 4YU* >>> >>> *P* *Think about the environment - do you really need to print this >>> email?* >>> >>> >>> >>> >>> >>> *From:* Intellectual Disability Research UK mailing list [mailto: >>> [log in to unmask]] *On Behalf Of *Glynis Murphy >>> *Sent:* 29 July 2014 14:36 >>> *To:* [log in to unmask] >>> *Subject:* Re: Ethics again >>> >>> >>> >>> One of my projects was the reason the Appeals procedure was set up – we >>> got turned down by two different ethics committees and at the time Dept of >>> Health said that since we hadn't got thru ethics they would remove funding. >>> I said no you jolly well won't! Where is the Appeals procedure? So we were >>> allowed to go to a third for SOTSEC-ID – and we got thru the third. >>> >>> >>> >>> Meanwhile they set up an Appeals procedure. >>> >>> >>> >>> I also had experience in Lancaster of an ethics com turning down a >>> student's project for stupid reasons, so I complained and we were allowed >>> to go to a second where we got thru no problem. >>> >>> >>> >>> My view is that they are often very blooody ignorant about ID, rarely >>> have a cline psych on them, and make very arbitrary and inconsistent >>> decisions. >>> >>> >>> >>> Im not saying we shouldn't go thru ethics procedures but I do think they >>> ought to work properly! >>> >>> >>> >>> glyn >>> >>> >>> >>> *From: *"[log in to unmask]" <[log in to unmask]> >>> *Reply-To: *"[log in to unmask]" <[log in to unmask]> >>> *Date: *Mon, 28 Jul 2014 15:44:45 +0000 >>> *To: *"[log in to unmask]" <[log in to unmask]> >>> *Subject: *Ethics again >>> >>> >>> >>> Have just had an unfavourable response to student NHS ethics >>> application, there were some valid issues that might have been amendments >>> but the core concerns showed significant misunderstanding of the ID >>> population. Will resubmit but was wondering if anyone has any experience of >>> using the REC appeals process? >>> >>> >>> >>> Dave >>> >>> >>> >>> Professor Dave Dagnan >>> >>> Consultant Clinical Psychologist >>> >>> Cumbria Partnership NHS Foundation Trust >>> >>> >>> >>> Tel: 01900 705825 >>> >>> Fax: 01900 608127 >>> >>> Mobile 07789 868259 >>> >>> >>> >>> We now publish the Cumbria Partnership Journal of Research, Practice and >>> Learning >>> >>> http://www.cumbriapartnership.nhs.uk/volume-1-issue-2-autumn-2011.htm >>> >>> >>> >>> >>> >>> >> >