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Communicating cancer information online

by Martin Ledwick | Analysis

20 December 2011

4 comments 4 comments

Cancer Research UK Facebook Page

Facebook is an important way of communicating with our supporters

In recent years we’ve seen huge changes in the digital channels through which people can access information. At Cancer Research UK we have looked hard to see how best we can communicate with the public through these media, not only to engage with people but also to ensure that they are provided with top quality information about cancer.

One thing we’ve noticed is that different channels work best for different purposes. For example it’s challenging to answer a complex medical question about cancer in the 140 characters of a tweet, but tweeting is an excellent way of keeping interested people up to date with the latest news about our research, campaigns and fundraising.

So we’re really pleased to see that the International Cancer Information Services Group (ICISG) have put together guidelines for Cancer Information Services about how best to use different types of media. As members of the ICISG we contributed to the guidelines, but there’s also been a lot of input from organisations that provide cancer information services from round the world.

The idea for the guidelines came out of a board meeting of the ICISG last year. During the meeting it became clear that many of the group’s members had questions about social media and digital communication channels. Many of the organisations who had dipped their toe into the field, out of the comfort zone of providing telephone and email based services, had drawn similar conclusions about which channel to use for different types of communication.

We have quite a bit of experience in communicating through different media. For example, we have more than 28,000 followers on Twitter and our nurse team held a day of tweets earlier in the year, to help our followers better understand what it’s like to work on our telephone helpline for people with cancer. We also have an extremely lively facebook page, which is a great way to engage with people and get support for our campaigns.

As well as providing information for people through the freephone number (0808 800 4040) and by email, our nurse teamnow answer questions on Yahoo Answers, where Cancer Research UK is a knowledge partner. They’re also writing for a three month period on Netdoctor, and run weekly Q and A sessions on our forum Cancer Chat. And, of course, we mustn’t forget that this blog itself is an important source of information about the latest research and cancer stories in the news.

As all of us move forward and explore new ways of communicating with each other we have to make every effort to choose the right channels to communicate different information. So it’s great to see these guidelines have been produced, and we hope it gives confidence that we’re doing our best to make sure we communicate with you through the right channel and in the right way.

Martin  Ledwick, Head of Cancer Research UK’s Cancer Information Nurses

    Comments

  • John F. Kirby
    22 December 2011

    Familial Cancer research – NH lymphoma & Cronic Lymphatic Leukemia ? My 3rd cousin has the latter whilst I have NHL. Both presently under control & in Remission. Our ages are 84 years

  • reply
    Kat Arney
    22 December 2011

    Hi John,
    Thank you for getting in touch. We’re glad to hear that you and your cousin are in remission, and wish you both the best of health for the future.

    You may find it interesting to browse our information about non-Hodgkin lymphoma and chronic lymphocytic leukaemia on our CancerHelp UK website:
    http://cancerhelp.cancerresearchuk.org/type/non-hodgkins-lymphoma/
    http://cancerhelp.cancerresearchuk.org/type/cll/

    In particular, you might be interested to know about a study searching for inherited gene faults that may be involved in CLL – it is thought that up to one in ten cases of CLL may be due to inheriting a faulty gene:
    http://cancerhelp.cancerresearchuk.org/trials/a-study-looking-genetic-causes-chronic-lymphocytic-leukaemia

    A number of research teams have investigated whether there is a family link between non-Hodgkin lymphoma and other types of cancer. Some studies have suggested that there may be a weak link between certain types of leukaemia and non-Hodgkin lymphoma, mainly for first-degree relatives (i.e. parents, siblings or children) rather than more distant relatives such as cousins. But other large studies have not found the same link. One problem is that there are many different subtypes of leukaemia and lymphoma, so it is difficult to tease out any specific links.

    If you have any specific questions about cancer or its treatment, please give our Cancer Information Nurses a ring on freephone 0808 800 4040 (9am-5pm, Monday to Friday).

    Best wishes, and we wish you and your family a merry Christmas and a peaceful new year.

    Kat
    Science Information Manager

  • John F. Kirby
    22 December 2011

    I have NH Lymphoma and my 3rd. cousin has Chronic Lymphatic Leukemia. We both have or are receiving Chemo and are in remission. What studies have been/are being done in Familial cancers?

  • Callum J Hackett
    20 December 2011

    I think the greatest potential for the platform is direct communication and social engagement. Obviously, it’s great that we’re informed of the latest news, but G+ is making itself stand out with ‘hangouts’ – basically video conferences between anyone who joins the host. This holds many possibilities such as Q&As with doctors and researchers.

  • Callum J Hackett
    20 December 2011

    Personally, I’d very much like to see increasing engagement on Google+. I already have Cancer Research UK circled there, and look forward to more activity as we all get used to the service.

    G+ provides a useful alternative to Twitter which, as mentioned, is too short-form to sustain real debate and conversation, and many people prefer it over Facebook because it has much better and more intuitive functions and Facebook is rife with privacy issues so some, me included, refuse to have an account with them.

  • reply
    Kat Arney
    20 December 2011

    Thanks for your comment Callum. We’re just getting to grips with Google+, so expect more from us there in the future. Is there any particular type of content you’d be interested in seeing on there?

    Best wishes,
    Kat Arney, Science Information Manager

    Comments

  • John F. Kirby
    22 December 2011

    Familial Cancer research – NH lymphoma & Cronic Lymphatic Leukemia ? My 3rd cousin has the latter whilst I have NHL. Both presently under control & in Remission. Our ages are 84 years

  • reply
    Kat Arney
    22 December 2011

    Hi John,
    Thank you for getting in touch. We’re glad to hear that you and your cousin are in remission, and wish you both the best of health for the future.

    You may find it interesting to browse our information about non-Hodgkin lymphoma and chronic lymphocytic leukaemia on our CancerHelp UK website:
    http://cancerhelp.cancerresearchuk.org/type/non-hodgkins-lymphoma/
    http://cancerhelp.cancerresearchuk.org/type/cll/

    In particular, you might be interested to know about a study searching for inherited gene faults that may be involved in CLL – it is thought that up to one in ten cases of CLL may be due to inheriting a faulty gene:
    http://cancerhelp.cancerresearchuk.org/trials/a-study-looking-genetic-causes-chronic-lymphocytic-leukaemia

    A number of research teams have investigated whether there is a family link between non-Hodgkin lymphoma and other types of cancer. Some studies have suggested that there may be a weak link between certain types of leukaemia and non-Hodgkin lymphoma, mainly for first-degree relatives (i.e. parents, siblings or children) rather than more distant relatives such as cousins. But other large studies have not found the same link. One problem is that there are many different subtypes of leukaemia and lymphoma, so it is difficult to tease out any specific links.

    If you have any specific questions about cancer or its treatment, please give our Cancer Information Nurses a ring on freephone 0808 800 4040 (9am-5pm, Monday to Friday).

    Best wishes, and we wish you and your family a merry Christmas and a peaceful new year.

    Kat
    Science Information Manager

  • John F. Kirby
    22 December 2011

    I have NH Lymphoma and my 3rd. cousin has Chronic Lymphatic Leukemia. We both have or are receiving Chemo and are in remission. What studies have been/are being done in Familial cancers?

  • Callum J Hackett
    20 December 2011

    I think the greatest potential for the platform is direct communication and social engagement. Obviously, it’s great that we’re informed of the latest news, but G+ is making itself stand out with ‘hangouts’ – basically video conferences between anyone who joins the host. This holds many possibilities such as Q&As with doctors and researchers.

  • Callum J Hackett
    20 December 2011

    Personally, I’d very much like to see increasing engagement on Google+. I already have Cancer Research UK circled there, and look forward to more activity as we all get used to the service.

    G+ provides a useful alternative to Twitter which, as mentioned, is too short-form to sustain real debate and conversation, and many people prefer it over Facebook because it has much better and more intuitive functions and Facebook is rife with privacy issues so some, me included, refuse to have an account with them.

  • reply
    Kat Arney
    20 December 2011

    Thanks for your comment Callum. We’re just getting to grips with Google+, so expect more from us there in the future. Is there any particular type of content you’d be interested in seeing on there?

    Best wishes,
    Kat Arney, Science Information Manager