Cancer information in the digital age

More and more of us are using the Internet to discuss our health

As more and more people use the Internet to talk to each other around the world, the way patients communicate with their doctors is changing rapidly – a fact dramatically illustrated immediately after the recent Japanese earthquake.

As reported in a fascinating Nature Reviews Clinical Oncology article last week, Japanese cancer doctors translated an American web-page about what cancer patients should do during a natural disaster, posted it onto the Internet, and then encouraged people via Facebook and Twitter to pass it on and print it out. It undoubtedly saved many lives.

In a similar vein, three letters in this week’s Lancet caught our eye, which discuss a number of interesting angles relating to social media and the relationship between patients, doctors and health authorities.

One letter, for example, talks about how Taiwanese doctors used a Facebook group to successfully lobby government for healthcare reform. Another discusses new guidelines on social media for doctors ‘down under’.

This new era represents a huge opportunity to improve health. As the authors of one of the Lancet letters writes,

Concerns about the effect of new technology on the doctor-patient relationship were probably being expressed when telephones were first introduced more than 100 years ago. Rather than viewing new technology as a threat, we should use the opportunities it offers to improve the efficiency and effectiveness of health systems and to improve people’s knowledge of their health and illnesses.

But how can we actually achieve this in practice?

Cancer Research UK is on the board of the International Cancer Information Service Group (ICISG) – a voluntary association of Cancer Information Services from around the world whose aim is to drive up standards, and to share best practice amongst organisations that provide information to patients and their families about cancer.

Cancer information ‘2.0’?

At the most recent ICISG board meeting, one of the hot topics was how we use and respond to social media.

The general consensus was that social media tools like Facebook and Twitter are extremely useful for drawing attention to good quality information sources, disseminating health messages, and drawing attention to activities and information sources elsewhere.

But they’re not necessarily the best place to answer complex individual questions about an individual’s situation. It’s incredibly hard to answer a patient’s question about cancer in a 140 character ‘tweet’, for example.

But there are some social media channels that many of us are already using.  Many cancer organisations provide online forums for patients to communicate with each other, and part of the ICISG discussion included forum managers from the UK, two Australian Cancer Information Services, and members from Canada linking into the board meeting using webinar technology to share ideas on best practice around forum policies and issues such as moderation.

Recently we have piloted using our Cancer Chat forum to host live question and answer sessions with our information nurse team.  This has proved to be popular.  And we’ve successfully used our Facebook and Twitter pages to draw attention to these sessions, which has worked really well.

Finite resources

But how do we respond if people ask us personal clinical questions directly through our Facebook page, Twitter feed, this blog, or any of the other ever-expanding social media platforms?  There are several things we need to consider.

Firstly, from a pragmatic point of view, we currently struggle to find the time to respond to detailed individual questions though multiple channels.  So at the moment we usually have to sign-post people who contact us through social media to our established patient information services, where they can talk things through with our nurses by phone or email.

Also, although this may seem counterintuitive, it usually takes more time to respond to someone in text than it does to have a telephone conversation with them, so it can take more resources for us to be able to communicate on a one-to-one basis over the web.

But there are bigger ethical issues that we need to think through too, mainly around confidentiality and the appropriateness of the channel the user has chosen.  Has the person who has asked the question thought through that the channel they are using might be visible to anyone using the web; it may be that the medium they’ve chosen isn’t the best place for them to have a confidential discussion with us about a personal issue.

But as the Lancet correspondents said above, there are also huge opportunities to improve access to information and engage with people through social media.  So organisations like Cancer Research UK have to keep our eye on the ball and make the most of what developing digital channels have to offer.

We need to be constantly thinking around what new technologies bring, to see how best we can use them to improve the lives of people affected by cancer, to get information out to all those who need it, to enable people affected by cancer to get support from one another and also – since prevention is better than cure – to get health messages about lifestyle factors like smoking, obesity and alcohol out to the wider public.

Martin

Martin Ledwick is head of Cancer Research UK’s Information Nurse service

• Image via Wikimedia Commons