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Accessing Biomedical and Health Information
Accessing Biomedical and Health Information
Accessing Biomedical and Health Information
Accessing Biomedical and Health Information
Accessing Biomedical and Health Information
Accessing Biomedical and Health Information
Accessing Biomedical and Health Information
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Accessing Biomedical and Health Information

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Lee-Ann Coleman presents Accessing Biomedical and Health Information at the Patients Participate! Workshop at the British Library, 17th June 2011

Lee-Ann Coleman presents Accessing Biomedical and Health Information at the Patients Participate! Workshop at the British Library, 17th June 2011

Published in: Health & Medicine, Technology
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  • 1. Accessing Biomedical and Health InformationLee-Ann ColemanHead of Science, Technology & Medicine
  • 2. Access to research information Academic researchers Open Paper Digital Access Public 2
  • 3. Dr John Jarvis, Managing Director, Wiley Europe (2004) Oral transcript of evidence given to the UK Government’s House of Commons Science & Technology Committee enquiry on Scientific Publishing in 2004One of the things that intrigues me is that there is some evidence that someof the support for open access is coming from outside the researchcommunity. There are some very high-profile stories of members of the publicwho want to read this kind of information. Without being pejorative or elitist, Ithink that is an issue that we should think about very, very carefully,because there are very few members of the public, and very few people inthis room, who would want to read some of this scientific information, andin fact draw wrong conclusions from it.I will say again; let us be careful because this rather enticing statementthat everybody should be able to see everything could lead to chaos.Speak to people in the medical profession, and they will say the last thingthey want are people who may have illnesses reading this information,marching into surgeries and asking things. We need to be careful withthis very, very high-level information. 3
  • 4. Sharon Terry, a patient advocate and member of the US Genetic Alliance, has two children with a rare genetic disease and founded PXE InternationalTerry is angered by the argument voiced by some publishers that the lay publicshould not have access to research information because they wontunderstand it. "Thats very insulting. Its ironic; because one of the things that theyoften say to us is that its dangerous for us to have that information because wewont know how to interpret it." But Terry feels that often the information on rarediseases is of low quality or even false. She claims that knowledge of some raregenetic diseases is so poor that certain myths get perpetuated in the literature.She feels strongly that patients experience with the disease could actuallyhelp to improve the quality and accuracy of the research literature."I also dont buy the argument that we should just get review articles." Terry arguesthat patients have an urgent need for cutting edge research findings and that theycannot afford to wait until reviews are written. Terry has learnt the skills to beable to assess research papers and determine whether they are valuable orclinically relevant. "And I am not unique either. There are 600 groups in theAlliance and I would say that half of them have that kind of savvy." 4
  • 5. What access is there to biomedical and health research literature? 5
  • 6. Expansion of T cells targeting multiple antigens of cytomegalovirus, Epstein-Barr virus and adenovirus to provide broad antiviral specificity after stem cell transplantation. (PMID:21539497)Abstract: Background aims. Hematopoietic stem cell transplant (HSCT) is the treatment of choice for aproportion of patients with hematologic malignancies as well as for non-malignant diseases. However,viral infections, particularly Epstein-Barr virus (EBV), cytomegalovirus (CMV) and adenovirus (Ad),remain problematic after transplant despite the use of antiviral drugs. We have shown that cytotoxic Tlymphocytes (CTL) generated against CMV-pp65, EBV and Ad antigens in a single culture are capable ofcontrolling infections with all three viruses after HSCT. Although pp65-specific CTL have provedefficacious for the control of CMV infection, several reports highlight the importance of targetingadditional CMV antigens. Methods. To expand multivirus-specific T cells with activity against both CMV-pp65 and CMV-IE-1, peripheral blood mononuclear cells (PBMC) were transduced with the adenoviralvector (Ad5f35-IE-1-I-pp65). After 9-12 days the CTL were restimulated with autologous EBV-transformed B cells transduced with the same Ad vector. Results. After 18 days in culture nine CTL linesexpanded from less than 1.5 × 10(7) PBMC to a mean of 6.1 × 10(7) T cells that recognized CMVantigens pp65 [median 273 spot-forming cells (SFC), range 47-995] and IE-1 (median 154 SFC, range11-505), the Ad antigens hexon (median 153 SFC, range 26-465) and penton (median 37 SFC, range 1-353), as well as EBV lymphoblastoid cell lines (median 55 SFC, range 9-301). Importantly, the T cellsrecognized at least two antigens per virus and lysed virus peptide-pulsed targets. Conclusions. CTL thattarget at least two antigens each of CMV, EBV and Ad should have clinical benefit with broad coverageof all three viruses and enhanced control of CMV infections compared with current protocols. Does access make it accessible? 6
  • 7. Creating community content How can we improve? Discovery TO HELP PEOPLE Trust ADVANCE Access KNOWLEDGE TO ENRICH LIVES Understanding Participation 7

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