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Who's behind cancernet.co.uk |
Cancernet is an independent
organisation, which links with a multidisciplinary of group of health
professionals and cancer survivors. Ten years of academic research
involving patients and their relatives has helped cancernet identify the areas
and levels of information which patients need to help them make decisions, cope
with the side effects of therapy and help them make informed lifestyle
choices. It also provides a useful
resource for services which may be useful after a diagnosis of cancer such as support groups, academic and commercial
organisations. Cancernet aims to provide:-
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Editor:
Professor
Robert Thomas Mb
Chb FRCP MD FRCR The founder and
current editor is a consultant, cancer
specialist, with 20 year’s experience in patient care. After formal
training in mainstream cancer care at the Royal Marsden, Royal Free and
Middlesex Hospitals London, he now leads cancer treatment services at the
Primrose Oncology & Research Unit, Bedford and leads the prostate
brachytherapy program at Addenbrooke’s Hospital, Cambridge University
NHS Trust. He is also a professor of medical information at The methodology for this research is also now being taught to colleagues and students internationally in formal teaching programs, medical conferences and invited lectures. More recently research has focused on how lifestyle can improve quality of life and disease outcome following a diagnosis of cancer. As well as a number of practical lifestyle strategies for patients, his team have designed and are conducting two of the UK largest quality of life and lifestyle studies in patients with breast and prostate cancer. Experience of writing stems from the extensive list of publications in international peer reviewed medical journals, the government backed national NHS cancer plan, the DoH review of complementary medicine and the NICE committee on supportive medicine. These credentials and experiences have been recognized by a number of high profile medical awards including the |
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Research
manager: Madeleine Williams is the research and development manager
at the Primrose Oncology Clinical Research Unit Bedford Hospital. Madeleine has
helped to co-ordinate a series of landmark trials which have gain international
praise following their publication in scientific journals and presentation in
conference as far a field as Australia, the USA, Mainland Europe and throughout
the UK. The first trial triggered the start of this information site - a national research project analysed
at the Institute of Public health Cambridge University that
shocked the UK cancer doctors by showing that over 70% of their patients
were not satisfied with the information they received about their cancer and treatment
options. Other trials went on to show that contrary to tradition medical opinion
patients adequately informed of their disease and treatment option were much better satisfied and had lower
treatment related anxiety and depression. |
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Technical
support - David Thomas is a website
technician with over 30 years experience in the health profession and an experienced
computer engineer. David has helped design this website and ensures its smooth
function with our internet provider Claranet.
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Pavla
Lickova |
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Health Education Publications houses the website and work with David Thomas to ensure the website meet UK legislation and functions well for the 87,000 users who use the site every week. |
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Quality control - how are the cancernet information sheets written? Each topic before submission goes through a strict writing process which utilises the experience of our patients & professional panel , helped by guidelines described in the discern project & centre for Health Information Quality. These topics are then passed through the IPRG and put onto the web site by the cancernet team (Part of Health Education Publications) who maintain and service the site. This process ensures that not only have materials been written by experienced professionals in the field, they have been reviewed by the patient who have actually received the treatments.
Summary of the editorial process:
[2] Information for patients research group discuss whether
there is a clinical need.
[3] If so, a panel is established of pharmacist,
oncologist, patients who have experience in the relevant disease and/or
treatments.
[4] A sheet is written, referring to patient experiences, available published evidence and of course pharmaceutical product information. We mention all potential uses including whether in a trial etc.
[5] The sheet is then submitted to our plain English panel
[6] It is then passed on to Health Education Publications (HEP) and placed on the web site www.cancernet.co.uk
[7] Ongoing feedback is then considered and the sheet is modified accordingly.
An attractive feature of the design of this website / hand held file system is its ability to integrate with local and other national strategies. The web site carries information on all the other UK patient support groups including contact names, addresses & telephone numbers and hyperlinks to their home page. It provide links to the other cancer information charities in the UK and internationally and also provides links to complementary and alternative medicine sites.
The design of the hand held also file facilitates the sharing of information from other sources. Although, A4 the file folds into an A5 size and clips together, making it neat, compact and easy to carry. There are pockets for two A5 booklets, for example BACUP, and any A4 sheet from any source can be included.
Our sponsors This site has only been made possible by the generous support by educational grants from our sponsors and the goodwill of our volunteers.
Prizes and awards The information for patients research group were runners up in the Hospital Doctor of the year and BUPA communication prizes and won a BMA patient information prize in 1999. In 2000 they won the prestigious NHS communication prize and have been nominated for several others. Overall winners of the HOSPITAL DOCTOR magazine 2000-1 Doctor of the year prize and the 2006 British Association of Oncology - Oncologist of the Year 2006
Further general information Your doctors and specialist nurses are in an ideal position to give you relevant information on your disease and treatment as they know your individual circumstances. Cancerbackup has a help line (0808 800 1234) and a prize winning video available in English, Italian, Urdu, Bengali, Gujarati & Hindi explaining Radiotherapy & Chemotherapy. Cancernet.co.uk has over 500 pages describing cancer, its management, practical tips and tool which patients, their carers and their doctors have found helpful during the cancer journey.