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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
 


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.

 

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( 01732 871018

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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