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NEWS EXTRA: Susan Mayor Advisory group to review NHS research ethics committees BMJ 2004; 329: 1258-f [Full text]

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LREC's need to be more visible

susanne McCabe Soostevens@hotmail.com   (26 November 2004)

LREC's need to be more visible 26 November 2004
susanne McCabe Soostevens@hotmail.com, retired CF24 3PF Send response to journal: Re: LREC's need to be more visible	Few members of a health prioritised society like the UK would disagree with Richard Smith's statement that research needs to be carried out. Much of a medical journal's business is publication of research. This has been made more open by his Editorship of the BMJ in recent years. BUT FEW MEMBERS OF THE PUBLIC READ MEDICAL JOURNALS. EVEN FEWER ARE INFORMED ABOUT RESEARCH ACTIVITY LOCALLY OR NATIONALLY. It is encouraging to see that issues other than just 'confidentiality' (important as it is not to see any erosion/abuse of this in a civilised society) are being addressed. Most 'Members of the public' as well as many who work in health related professions though, have little or no idea of what a LREC is; what research is being carried out in their name, ie 'for the common good', using their taxes and their information;no say in what projects are researched;and as importantly how RECs are run. Who sits on them; how are they appointed; THERE IS NO INFORMATION GIVEN BY ANY OF 9 RANDOM LREC's TO INFORM THE PUBLIC WHERE THEY MAY ACCESS A COPY OF THE ANNUAL REPORT. THERE IS NO INFORMATION ON COREC's WEBSITE IT IS IMPOSSIBLE TO GET A RESPONSE FROM THE PERSON HEADING OREC IN WALES NO ANNUAL REPORTS ARE NECESSARILY LODGED AT CHCs OR ANYWHERE ELSE IN WALES THEY ARE ELUSIVE AND HIDDEN FROM VIEW. ARE DIFFICULT TO ACCESS EVEN IF PEOPLE KNOW OF THEIR EXISTENCE. Two of the 9 Committees sent a copy of their Annual Report without query straight away and were helpful with queries. The rest were defensive-obstructive; defensive but eventually sent one; naturally curious about the reason for wanting one - the majority stated that a request for a copy was very unusual. HARDLY SURPRISING when no effort is made to inform people of their existence or where they may access them easily. The best had extensive information on the Committee itself as well as it's deliberations and comprehensive list of research applications.It also published a Report on-line. It included for example not just members interests but the number of committee attendances; the place of work and rganisation/institution of researchers; - but the status of one of the lay members as truly lay was dubious. The least impressive have withheld their reports as yet but of one received without hesitation, reservations include that since serious failings were identified with the constituency and activities of one LREC in the area it has been merged with another - but the 'Lay member/ex Chair of the disbanded committee is still serving on the merged committee. There has not been an entirely healthy or open recruitment to the newly formed committee when so many memebers have simply transferred. There is no attendance information; no information about the place of work/organisation/institution of the researchers; the majority of the committee members are from one specific profesional group with an interest in deveoping research in fields where the majority of proposals have been accepted. ie the majority of proposals come from colleagues in the same geographical area and in the same line of work/research as the majority of committee members. Whether they step down or not when interests are obviously compromised it does not engender trust in the process. Whose needs are being met in such a situation? Researchers or the community which has a diverse mix and diverse health health problems in need of research. Memebers of the public, nor the wider workforce have been canvassed as to their priorities - the agenda is set by the most influential. Hopefully the group set up to look into LRECs will consider problematic issues of this nature. Reservations about the group itself though include; the few number of people involved in the investigation (4 with one observer from each UK region) - have decisions been made already? is this just PR?; How truly 'Lay' are the members; the very short time span to complete the study when none of the group are devoted entirely to this issue; and how appointments to such groups are made in the first place. Competing interests: A longstanding interest/study of RECs