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

1. Accessing Biomedical and Health Information
Lee-Ann Coleman
Head of Science, Technology & Medicine

2. Access to research information
Academic
researchers
Open
Paper Digital Access
Public
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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 2004
One of the things that intrigues me is that there is some evidence that some
of the support for open access is coming from outside the research
community. There are some very high-profile stories of members of the public
who want to read this kind of information. Without being pejorative or elitist, I
think 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 in
this room, who would want to read some of this scientific information, and
in fact draw wrong conclusions from it.
I will say again; let us be careful because this rather enticing statement
that everybody should be able to see everything could lead to chaos.
Speak to people in the medical profession, and they will say the last thing
they want are people who may have illnesses reading this information,
marching into surgeries and asking things. We need to be careful with
this very, very high-level information.
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4. Sharon Terry, a patient advocate and member of the US
Genetic Alliance, has two children with a rare genetic disease
and founded PXE International
Terry is angered by the argument voiced by some publishers that the lay public
should not have access to research information because they won't
understand it. "That's very insulting. It's ironic; because one of the things that they
often say to us is that it's dangerous for us to have that information because we
won't know how to interpret it." But Terry feels that often the information on rare
diseases is of low quality or even false. She claims that knowledge of some rare
genetic diseases is so poor that certain myths get perpetuated in the literature.
She feels strongly that patients' experience with the disease could actually
help to improve the quality and accuracy of the research literature.
"I also don't buy the argument that we should just get review articles." Terry argues
that patients have an urgent need for cutting edge research findings and that they
cannot afford to wait until reviews are written. Terry has learnt the skills to be
able to assess research papers and determine whether they are valuable or
clinically relevant. "And I am not unique either. There are 600 groups in the
Alliance and I would say that half of them have that kind of savvy."
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5. What access is there to biomedical and health research literature?
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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 a
proportion 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 T
lymphocytes (CTL) generated against CMV-pp65, EBV and Ad antigens in a single culture are capable of
controlling infections with all three viruses after HSCT. Although pp65-specific CTL have proved
efficacious for the control of CMV infection, several reports highlight the importance of targeting
additional 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 adenoviral
vector (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 lines
expanded from less than 1.5 × 10(7) PBMC to a mean of 6.1 × 10(7) T cells that recognized CMV
antigens pp65 [median 273 spot-forming cells (SFC), range 47-995] and IE-1 (median 154 SFC, range
11-505), 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 cells
recognized at least two antigens per virus and lysed virus peptide-pulsed targets. Conclusions. CTL that
target at least two antigens each of CMV, EBV and Ad should have clinical benefit with broad coverage
of all three viruses and enhanced control of CMV infections compared with current protocols.
Does access make it accessible?
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7. Creating community content
How can we improve?
Discovery
TO HELP
PEOPLE Trust
ADVANCE Access
KNOWLEDGE
TO ENRICH LIVES Understanding
Participation
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