The Cochrane Renal Group


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The Cochrane Renal Group

  1. 1. The Cochrane Renal Group Minutes of the meeting of the Advisory Board held on Wednesday February 16, 2005 at 9 am at the University of Sydney 1. Present: Robert Atkins (from 9.50 am), Jonathan Craig, John Charlesworth, Jim Dellit, Sally Green, David Harris, David Henderson Smart (till 10.30 am), Elisabeth Hodson, Kim Oates, Steven Rich, Narelle Willis. 2. Apologies: Andrew Coats 3. Chairperson: David Harris chaired the meeting till 10.20 am and Robert Atkins chaired the meeting from 10.20 am to the end of the meeting at 11.45 am. This was done as David Henderson Smart was not able to stay for all the meeting 4. Acceptance of the minutes of the Advisory Board held on June 3, 2004: These were accepted without amendments. 5. Business arising from the previous meeting: • Distribution of Renal Health Library in Kidney International: Jonathan Craig reported that both the International Society of Nephrology and the publisher of Kidney International had agreed to this. An additional $10,000 is needed to provide the additional CDs. • Endorsement by Asia-Pacific Society of Nephrology: This had been obtained. • Additional referees: Narelle Willis reported that she had received names of Kidney International referees from Bob Atkins and Nephrology referees from David Harris. She had not received American Journal of Kidney Disease or Journal of American Society of Nephrology referees from Jonathan Craig. Action: Jonathan Craig to request information on referees from American Journal of Kidney Disease or Journal of American Society of Nephrology. • Statistics from Cochrane website: These have not been obtained. Action: Narelle Willis to contact Wiley for information on “hits” to the Renal Health Library website. • Italian Regional Co-ordinator: Jonathan Craig reported that Giovanni Strippoli had been appointed as Regional Co-ordinator of the Cochrane Renal Group in Italy. The position is funded through a PhD scholarship to Giovanni. Sally Green asked whether the possibility of local funding from the Italian Government could be looked at. Action: Jonathan Craig to discuss this with Giovanni Strippoli 6. 2004 Annual Report: Narelle Willis presented the 2004 Annual Report to the Advisory Board members. • Staff: A part time Research Assistant (Fiona Rinaldi) had been appointed increasing staff numbers to 5 (FTE 4.2). • Editors: Now 10 since appointment of Giovanni Strippoli • Regional Co-ordinators: In response to a question from Bob Atkins, Jonathan Craig said that it had been decided to appoint regional co-ordinators rather than have regional co-ordinating centres. It is hoped that Paul Roderick might become a regional co-ordinator in UK. Ideally there should be regional co-ordinators throughout the world. David Harris thought that it would be hard to break into Asia. It was suggested that the Cochrane Renal Group and the South Asia Cochrane Network (India, Sri Lanka, Pakistan, Bangladesh) could be advertised on the new website for Asia-Pacific Society of Nephrology to encourage potential reviewers. • Editors’ and reviewers’ meetings in Europe: Jonathan Craig reported on the successful meetings in Europe. He felt that having a day meeting in Europe to help reviewers on their reviews was useful though having reviewers visit the Cochrane Renal Group in Australia was the preferred option. 1
  2. 2. • Guideline Support: In response to questions from David Henderson Smart, Jonathan Craig stated that the CARI guidelines project was funded by the pharmaceutical industry through Kidney Health Australia. The Cochrane Renal Group has received $20,000 per annum for the past 3 years from both Kidney Health Australia and the Australia and New Zealand Society of Nephrology for infrastructure funding. Originally the literature searching done by the Cochrane Renal Group was done on the basis of this funding. However the searching workload was huge. In response to a question from Jim Dellit, Jonathan Craig reported that Kidney Health Australia would pay $10,000 in 2005 for searching to be done and the Cochrane Renal Group would limit their work according to this amount. Jim Dellit emphasised that CARI should pay for work done. Since he sits on the CARI Committee, he is happy to follow up this issue if there are continuing difficulties. In contrast to the CARI project, the European Best Practice Guidelines had involved a formal contract for literature searching, provision of hard copies of randomised controlled trials and also grading of the evidence for guideline writers. David Henderson Smart suggested that NHMRC be approached to fund the CARI guidelines process. Jonathan Craig reported that NHMRC had been approached but had not shown interest in the CARI Guidelines project. • Reviews, protocols and titles: Narelle Willis reported that 10 new reviews, 9 updated reviews and 20 new protocols had been published in 2004 as well as the registration of 33 new titles. This increases the total from 83 to 116. In response to a question from Sally Green, Narelle Willis stated that reviewers are followed up every 12 months for updates and that potential new trials are entered into Review Manager for the reviewers. In response to a question from Elisabeth Hodson, Sally Green reported that there are no specific processes for ensuring updates. If necessary new reviewers can take over a review for further updating though new protocols are not usually necessary. • Specialist trials register: This now contained 8318 publications of which about 25% came from hand searching conference proceedings. Ongoing trials and diagnostic test studies were now included. There are about a further 1000 abstracts to be added but it was unclear how many new trials would be added each year. The Trial Search Co-ordinators are now using “Meerkat”, a system designed to create a study-based register where all the publications from a single trial are linked together. • Renal Health Library: The second issue is available as CD and on the web. It consists of trials from the specialist register, Cochrane Renal Group reviews, other relevant Cochrane reviews, relevant non-Cochrane meta-analyses and diagnostic test studies. There remains a question about whether the Cochrane Renal Group has to obtain permission from the individual authors of reviews included in the Renal Health Library. Sally Green said that this should be the responsibility of Wiley, the publisher of the Cochrane Library. • Membership: That had increased from 285 to 433 in 2004. There is also a large non-member list, who are peer referees or wish to receive Cochrane Renal Group information. • Dissemination: Website “hits” appeared stable. Since the University of Sydney, which hosts the website, had to replace its server, there have been no data on the source of the “hits”. • Newsletters, abstracts, publications: Jonathan Craig estimated that there could be a further 180 reviews based on trials in the Register. Action: Narelle Willis will provide a report on publications at the next Advisory Board meeting. 7. Funding of the Cochrane Renal Group: Jonathan Craig reported that the Cochrane Collaboration had determined that because of the perception of potential conflict of interest, there should be no pharmaceutical support of individual reviews or of infrastructure support for Review Groups. The Cochrane Renal Group is heavily dependent on industry funding for salary support. Review Groups were given a 2 year amnesty to April 2006 to find alternative revenue sources. Jim Dellit pointed out that the Consumer Group of the Cochrane Collaboration had not had input into this decision. In response to a question from David Henderson Smart, Jonathan Craig stated that societies such as the International Society of Nephrology do not support the Cochrane Renal Group directly but in kind through circulating the Renal Health Library in their journals. David 2
  3. 3. Henderson Smart suggested that the Commonwealth Government be approached in view of the threat to a valuable product. Jonathan presented two options for continuing funding for all the activities of the Cochrane Review Group. Currently the Cochrane Renal Group receives the following amounts annually – numbers are approximate:- Commonwealth of Australia $75,000 Kidney Health Australia $10,000 NHMRC CCRE $50,000 Amgen $150,000 Novartis $20,000 Wyeth $10,000 Jansen-Cilag $10,000 TOTAL $325,000 • Option 1: Establishment of a Foundation within the University of Sydney Medical Foundation. Jonathan Craig had discussed this with the Collaboration’s funding arbiter. All funding for the Cochrane Renal Group would go to this Foundation. However Sally Green and David Henderson Smart felt that a small Foundation, which provided all its money to the Cochrane Renal Group would not satisfy the Collaboration that there was no conflict of interest. Jim Dellit and Kim Oates supported a Foundation with an independent board. David Harris suggested that Kidney Health Australia could manage the Cochrane Renal Group’s funds. • Option 2: The Cochrane Renal Group produces the Renal Health Library and sells this product to industry for them to distribute as they wish. Industry could buy the product directly from the publisher. The advantage was felt to be that industry may prefer this model to the Foundation as industry would have “naming rights” for the product. However there was a risk that the Cochrane Renal Group would lose control of the product. Jonathan Craig drew the attention of members of the Advisory Board to the email from Nick Royle, CEO of the Cochrane Collaboration, in which he reported that Wiley would not publish the Renal Health Library and that Update Software would publish it. They would however take a licensing fee of £3000 from Update Software of which 40% would go to the Collaboration in line with the agreement between Wiley and the Collaboration. The Collaboration will give this fee to the Cochrane Renal Group. Jonathan Craig is concerned that Wiley will demand a much higher licensing fee if the product is to be sold directly to industry. Actions: 1. Jonathan Craig is to meet with Andrew Coats on February 17 to discuss the establishment of a Foundation within the University of Sydney Medical Foundation. 2. Jonathan Craig to meet with industry partners to determine their views on the options above. 3. Jonathan Craig to request a copy of the agreement between Wiley and the Cochrane Collaboration and to find out whether the Cochrane Renal Group can sell the CDs directly to industry since Wiley own the copyright and intellectual property rights for the reviews though not the Trials Register. 4. Jonathan Craig to establish with Wiley that if CDs are bought directly by industry from the publisher (Update Software), the license fee paid by Update will not increase. 8. Information on usage of Renal Health Library: Steven Rich asked what information the Cochrane Renal Group had on the use of the Renal Health Library. He felt that more marketing information is required to assist with promotion of the product to potential donors to the Foundation. He asked whether the reviews or the trials register were most sellable. Jonathan Craig agreed that there was little information on users but felt that both were important to users. Narelle Willis has information on people, who request the Renal Health Library from the Cochrane Renal Group, 3
  4. 4. and could survey these people. Sally Green suggested that more information could be obtained from Wiley based on “hits” to the Renal Health Library website. Also the Australasian Cochrane Centre is shortly to evaluate the use of the Cochrane Library within Australia. David Henderson Smart pointed out that Wiley will market the Library more extensively so it should develop a higher profile in the USA, where nephrologists were not currently great users of the Cochrane Library. There is no information on the update of the Renal Health Library in Japan. Actions: 1. Narelle Willis to pursue with Steven Rich the possibility of employing a marketer known to Steven to learn more about the use of the Renal Health Library and renal reviews in the Cochrane Library. This could require a questionnaire to be sent out after approval to the renal community. 2. Bob Atkins to contact the editor of the Japanese version of Kidney International to find out whether the Renal Health Library CD could be included. 9. New initiatives of the Cochrane Renal Group: Jonathan Craig reported on new initiatives by the Cochrane Renal Group. 1. Systematic reviews of diagnostic test studies: The Cochrane Renal Group is involved in piloting reviews, developing the studies register and developing the handbook ready for launch at the Cochrane Colloquium in Melbourne in October 2005. No funding from the Collaboration is given for this to the Cochrane Renal Group. The Collaboration funds the Diagnostic test methods group. 2. Diabetes Reviews: Using the national health priority areas, the Australasian Cochrane Centre had obtained funding to establish a regional co-ordinating centre for diabetes in Sydney. Some of this funding ($31,000) had come to the Cochrane Renal Group for training and support to do a cross over review with the Regional Co-ordinating Centre. 3. Prospective register of trials: It is suggested that the Cochrane Renal Group could host such a register if and when it is set up by specialist nephrology and transplant journals. 4. Global Guidelines Group: This is a new initiative and there is potential for the Cochrane Renal Group to house one of the evidence groups. 10. Other business: Narelle Willis will provide an organisation chart and finance statements to Advisory Board members. In future these would be attached to the Advisory Board agendas. 11. Next meeting: There would be a teleconference in 2-3 months time to discuss the options for funding the Cochrane Renal Group. The next full Advisory Board meeting will be in September 2005 with a 10 am start. The meeting closed at 11.45 am. 4
  5. 5. From: Nick Royle [] Sent: Thursday, 10 March 2005 10:49 PM To: 'Jonathan Craig' Subject: RE: PPG decision on the Renal Health Library Hi Jonathan - does this explain (if not excuse!) why PPG were wanting clarification that authors knew their reviews were to be used, in the RHL, and do I need to do anything further? Regarding the copyright clause in the contract, the relevant clauses state that 'The Cochrane Collaboration hereby grants the Publisher [Wiley] an exclusive right to publish, produce, promote, sell and distribute the Cochrane Collaboration output', 'The Publisher [Wiley] shall have the exclusive right to sublicense the rights [in the previous sentence] subject to the approval of the PPG, including, but not limited to, the right to grant or sublicense any reprint, subsidiary, derivative or other rights thereto', and 'The Publisher [Wiley] shall be responsible for sub-licensing all Cochrane Collaboration Output to third parties on terms and conditions approved by [PPG]'. Please let me know if I can help further? With kind regards, Nick Nick Royle Chief Executive Officer The Cochrane Collaboration Summertown Pavilion, Middle Way, Oxford OX2 7LG, UK Tel +44 1865 310138 (and Answerphone) Fax +44 1865 316023 E-mail For information on the Cochrane Collaboration, see: For information on the latest Cochrane reviews see: -----Original Message----- From: Jonathan Craig [] Sent: 10 March 2005 10:01 To: Nick Royle Cc:; Sally Green; Mark Starr Subject: Re: PPG decision on the Renal Health Library Thanks Nick Kind regards Jonathan Craig Nick Royle wrote: >Dear Jonathan, > >Thanks for your e-mail. I regret that you found my recent e-mail 5
  6. 6. >clumsy, my >intention was to offer you the courtesy of informing you of the PPG's >decision as soon as practicably possible, and for you to hear that at >first hand and not through a third party. I apologise if that caused >offence. > >The PPG similarly thought that it would be helpful if you could inform >authors that you would be using their papers, and was mindful of >avoiding the angst caused in another case where the instigators of a >derivative product had not thought to do so, and which has now caused >the probable failure of that product. It would be a shame to replicate >that problem. PPG >was similarly mindful that, judging by the vociferous debate at the AGM >in Ottawa, some authors might wish to clarify the use of their papers >when they >were to be used in a product that appears to have commercial >sponsorship. As >you say, Wiley have the technical responsibility for permissions in a >copyright sense, but discussion of commercial sponsorship goes beyond >that narrow remit. I am sure that most authors will be delighted to >know that their work is to be used in the RHL. > >Please do get back to me if I can provide further clarification. > >With best wishes, > >Nick > >Nick Royle >Chief Executive Officer >The Cochrane Collaboration > >Summertown Pavilion, >Middle Way, >Oxford OX2 7LG, UK >Tel +44 1865 310138 (and Answerphone) >Fax +44 1865 316023 >E-mail > >For information on the Cochrane Collaboration, see: >For information on the latest Cochrane reviews see: > > > >-----Original Message----- >From: Jonathan Craig [] >Sent: 22 February 2005 09:25 >To:; Sally Green; Mark Starr; Nick Royle >Subject: PPG decision on the Renal Health Library > > >Dear Katthy/Nick > >Thank you for your recent communication re. approval and arrangements >for publishing the RHL for the coming year. > >Our advisory board met last week and two issues arose that were felt to 6
  7. 7. >need further discussion. > >Our proposed publisher, Update Software wrote to the PPG, on the advice >of the PPG, but the communication was to me, as the relevant Co-Ed >rather than Update Software. This communication seems a bit clumsy at best. > >We were a little surprised that we were instructed to obtain agreement >from all authors of relevant reviews to be included in the RHL, even >though Wiley holds copyright. If we need to ask agreement for all of the >authors it becomes quite unclear what our payment to Wiley actually buys. > >Kind regards > >Jonathan Craig > > > 7