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Unlocking the door

Removing the barriers to fast distribution is key to cancer communications

A key unlocking a doorOpen access is the subject of much discussion among academics and publishers and plays an important role in the communication of peer-reviewed information to scientists, clinicians and educated patients. However, there is substantial disagreement about the open access concept, along with much discussion about the economics of funding an open access communications system for clinical publications. Reactions range from moving with enthusiasm to a new open access publishing model, to experiments in providing as much free or open access as possible, to active lobbying against open access proposals.

The idea of open access was born out of research scientists' need to retrieve information quickly and cost-effectively that would enable them to accelerate their own research and, in turn, communicate with their peers quickly and more effectively.

It follows the trend towards increasing use of online resources to access published research, in some cases negating the need for paper journals. Two models of open access are now available: first, publishing in an open access journal, which does not charge the reader and, in some cases, the submitter; second, archived peer-reviewed articles published in subscription journals in an online repository such as PubMed.

In 2008, the Research Councils in the UK (RCUK) published a submission paper entitled Open Access to Research Outputs. They concluded that publicly-funded research should be made available and accessible as rapidly as possible and should be effectively peer reviewed. However, the reality is that most cancer research articles are published in traditional paper journals, made available only to subscribers at considerable cost to the research funder, such as charities or governments, and only accessible to non-subscribers to a specific journal after six months.

Under the current system of journal subscription, many scientists cannot afford to pay for access to the information they require.

Partly as a result of this limited access to information, clinical research in Europe, including cancer research, although of high quality, can often be fragmented, un-coordinated and slow in translating benefits to patients. Hence, the quality of cancer care delivery is inconsistent across European countries.

Various initiatives have been developed in an attempt to resolve these issues.

The idea of creating a directory of open access to journals covering all therapeutic areas was proposed at the First Nordic Conference on Scholarly Communication in 2002. As a result, a directory of open access journals, managed by Lund University in Sweden, was created in 2003. This has enabled greater visibility and ease of use of open access scientific and scholarly journals and promoted their increased usage and impact across a broader audience. The directory includes over 50 journals for the cancer community and the list is growing.

With a specific focus on cancer, the European Parliament commissioned the Eurocan+Plus project in 2005 to identify the roadblocks in cancer research and cancer care delivery. This resulted in a vast consultation programme with every sector of the system, from laboratory discovery, through translational oncology to novel pharmaceuticals and even governmental guidelines. One key issue identified was poor communication owing to the overuse of technical jargon. A key priority was better and faster communication between the 'silos'.

 

Professor McVie provides complementary insight in this video interview




The 2008 Eurocan+Plus Feasibility Study for Coordination of National Cancer Research Activities states: "Despite a strong tradition in biomedical science in Europe, fragmentation and lack of sustainability remain formidable challenges for implementing innovative cancer research and cancer care improvement. There is an enormous duplication of research effort in the Member States, which wastes time, wastes money and severely limits the total intellectual concentration on the wide cancer problem. There is a striking lack of communication between some of the biggest actors on the European scene, and there are palpable tensions between funders and those researchers seeking funds."

A subsequent Seventh Framework Programme (FP7) project, funded by the European Commission, called Eurocancercoms was one result of this exercise. Its aim is to address the issues surrounding communication and dissemination of cancer information across Europe. The project is divided into six areas involving the whole cancer community, from scientist to patient. There are a number of demonstration projects among the deliverables, the ultimate of which will be a complete website solution.

Case study
A partner in this programme is ecancermedicalscience set up in response to the need for free access to cancer publications. The European Institute of Oncology in Milan, Italy, established this independent online journal, which publishes research articles online after full peer review and immediately upon acceptance. Its goal is to improve communications between sub-specialised cancer scientists and clinicians by working interactively and faster. In addition, it actively encourages the communities of scientists and carers to exchange ideas and research, with the aim of speeding up the time from discovery to patient benefit. In the two years since launch, over 100 peer-reviewed articles have been published, some within two days of submission.

Through online, multimedia technology and a community poised to podcast and blog, ecancermedicalscience also offers a multimedia and multidisciplinary approach to cancer. It covers many areas of cancer research, and several outputs have included videos as part of the articles published; it is difficult to write about robotic surgery in the prostate without demonstrating the actual operation in glorious technicolour. Further, there is no limit to article length. In fact, one article on drug discovery and its financial research globally was 270 pages long. Several negative trials have also been highlighted. The pharmaceutical industry is doing its best to meet the criticism of suppressing negative trials, but most journals turn them down.

On the ecancer.tv part of the journal site, over 400 videos featuring interviews with key opinion leaders, round-table debates and congress highlights have been watched over a million times via the journal website, YouTube, Blinkx and Sciencestage. As intended, the audience is heterogeneous, numerous (25,000 people per month) and based in many countries. To date, people in 203 different developed and developing countries have used this service.

From the clinicians' point of view, there is recognition that the acute care model, with a relatively passive patient, is inappropriate in oncology. The aim is to have informed, proactive patients who work in partnership with their clinician. This means that the ability to access information on cancer and its treatment easily is important to both clinicians and cancer patients. As many as 30 per cent of patients access the internet to find out more about their diagnosis and possible treatments and many report that access to information helps them to cope with their diagnosis. Further, oncologists believe that access to appropriate information can improve patients' understanding of their condition.

Reliable sources
Patients who want to understand their disease and its treatment better can use open access links to appropriate articles via patient organisation websites or patient information sheets. This gives them access to reliable and up-to-date information that they can absorb in their own time either before or after meeting with their healthcare professional. This not only empowers patients but also results in more meaningful discussions with healthcare professionals and negates the need to digest a lot of new information during the consultation, which is often an emotional and stressful time in which there is frequently minimal retention of facts.

Open access to published peer-reviewed research outputs is here to stay. With its provision of up-to-date, relevant and meaningful information to a broad audience, it will result in a forum of rapid and wide dissemination of ideas and discoveries that are needed to beat cancer. In addition, by allowing cancer patients access to this information, it will increase the opportunities for them to become effective partners in their cancer care.

The Author
Prof J Gordon McVie MD, FRCP, FRCS Ed, FMedSci, DSc (Hon), is editor of ecancer.eu and senior consultant at the European Institute of Oncology, Milan, Italy.

To comment on this article, email pme@pmlive.com

22nd July 2010

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