Cancer in cyberspace – information exchange

Social media is a diverse and rapidly evolving cluster of technologies that creates online communal spaces where groups of people can interact, discuss, publish and exchange information.¹ Facebook and Twitter are among the most popular platforms, with Facebook reporting 1.11 billion monthly active users as of March 2013,² and Twitter reporting more than 554 million active registered users.³ New figures suggest that Irish people use Facebook more often than people in any other country in the English-speaking world.⁴

In 2012, the Irish Cancer Society’s (ICS) Cancer Information Service (CIS) began engaging with the general public through social media (Facebook and Twitter). At the end of 2012, an audit was performed to assess:

• Whether social media is an appropriate forum to deliver cancer information
• The response to the posts generated by CIS. 

The audit covered the six-month period from July to December 2012.   

Results 

A total of 73 cancer information posts were posted on Facebook and 56 tweets were tweeted on Twitter. On Facebook, the posts were liked by 9,898 people, with 1,588 opting to share the content with their friends. A total of 310 comments were published and, overall, the posts were viewed by 625,938 people. 

On Twitter, the tweets were retweeted 336 times and favoured 43 times. Total interactions on Facebook and Twitter for this six-month period numbered 626,317.

Social media is a dialogue⁵ so it was important to also consider qualitative data when measuring the impact of our posts. 

Responses to our posts by the general public, cancer patients, their family and friends have been predominantly positive and reassured us that we are sharing information that is of interest to our followers. Sample comments from 2012: 

• “You Guys Rock! Thanks for being there”
• “Great idea yet again. Loved the last one as it was so informative and I learned a few things. Keep up the great work and thank you”
• “Got my answer – thank you very much – had app scheduled with doc but feel somewhat assured”. 

Social media in Ireland

Social media helps to reach people when, where and how it is convenient for them. Recent studies reveal that the information landscape in Ireland has fundamentally changed as more people go online more often. 

According to the latest Eircom Household Sentiment Survey,⁶ the average Irish home now has four potential online devices, with smartphone ownership standing at 1.6 million in Ireland. 

A 2012 Google Ireland study showed that 67% of owners access the web via a mobile device multiple times per day, spending an average of 9.2 hours per week online.⁷

According to the Facebook statistics service Quintly, Facebook’s user base in Ireland peaked in December 2012 at 2.3 million monthly active users, representing 71% of the country’s online population.⁸ Seven in 10 of these Irish users return to social media more than once a day.⁹

Irish people are now exploring new ways to gather information and make health-related decisions, with Eircom reporting that 56% of parents search online to diagnose symptoms when their children are ill. As an increasing number of people turn to the internet to seek health-related information, social media is poised to become the next technological wave in healthcare.¹⁰

Social media and healthcare

In April 2013, the Irish Medical Organisation (IMO) produced a position paper on social media,¹¹ at the same time the Pharmaceutical Society of Ireland (PSI) produced guidance on the use of digital and social media.¹² An Bord Altranais launched its Social Media and Social Networking Guidance in October 2013.¹³

Social media was adopted by the CIS with great caution. One of the most valued, unique features of the CIS is that it is confidential and anonymous; enquirers can share their private concerns freely with a specialist cancer nurse. Social media, on the other hand, is a very public forum with a huge audience, hence CIS nurses were very mindful of confidentiality. Maintaining patient confidentiality and ethical practice are the foundations of nursing, thus careful appraisal of ‘fit for purpose’ must be considered when embracing new technology.¹⁰

There is a general sense of reluctance among healthcare professionals to engage with social media in a professional capacity, many are concerned that social media is not an appropriate forum for health-related content or that a portion of the audience may be too young for medical information. 

Equally, there are concerns that social media will depersonalise and desensitise people to illness and death.¹⁴ However, Qualman argues that social media is ‘word of mouth’ of the 21st century and it is not a matter of whether we engage with social media or not, but how well we do it.¹⁰

Content 

Starting in March 2012, CIS nurses began posting several cancer-related messages on Facebook and Twitter every week and, where possible, encouraged engagement. The messages were focused on the three main groups of enquiries: health promotion, cancer prevention and cancer information. Careful monitoring of the comments and private messages was performed by the CIS social media team on a daily basis. Where appropriate, comments were replied to publicly, however, when necessary, enquirers were redirected to the National Cancer Helpline to discuss the issue in confidence. 

A concerted effort was made to ensure that the content was relevant, useful and interesting, balancing consumer-friendly, action-oriented messaging with the degree of professionalism expected from CIS.

Sample posts from 2012 

“Hi all, if you have any questions about prostate or testicular cancer, tune into our live Q&A tomorrow (Wednesday) from 2-4pm when one of our specialist cancer nurses will be logged onto Facebook. If you can’t make it at 2pm, post your question in the comments below and we’ll make sure to address it during the Q&A session. Or if you’d prefer to remain anonymous, send us a private message with your question and we’ll answer it in our Q&A without sharing your personal details. Help us spread this message by liking and sharing it with your friends.”

“Caring for someone seriously ill at home can be very difficult so it’s important to get help and support. See our booklet A Time to Care for useful advice: www.cancer.ie/sites/default/files/content-attachments/time_to_care_2010-1.pdf?fb”

Method 

With a view to determining what sort of content would be appropriate to post, we reviewed social media usage of our peer organisations, principally the American Cancer Society and Macmillan Cancer Support UK. Both organisations were seen to be systematically posting cancer information on Facebook and sharing content on Twitter. 

Many Irish organisations are also using social media to promote their services and share health messages with their followers, including the Irish Heart Foundation, Bodywhys and Headway Ireland. 

It was evident from our peers that interaction and engagement with the audience was vital. Engagement is deemed one of the most important aspects of a social presence as this is where critical one-on-one dialogue occurs, and it is an opportunity for an organisation to reinforce its voice in the social sphere. With this in mind, CIS decided to host live question and answer (Q&A) sessions online.

Live Q&As – audience engagement

On an advertised and designated day and time, one of our oncology nurses fielded questions and generated discussion on a specific cancer. In 2012, CIS successfully co-ordinated two breast cancer live Q&As during the annual breast cancer awareness campaign, and one prostate and testicular Q&A during the Movember campaign. 

Policy 

As all CIS communication is strictly governed by a policy, the social media team recognised the need for a social media policy to ensure consistency, safety and effective communications. Thus, a number of social media policies published online were consulted. Particular attention was given to those published by government health organisations, libraries and universities. Based on the content, recommendations and lessons learned therein, a social media policy was developed to suit the needs of CIS. 

The policy was designed as a guide to govern all CIS activity on social media networks. It outlines how to comment and respond to comments on Facebook and Twitter, how to engage with followers and how to maximise security on these networks. 

It is based on current best practices, and also highlights the need to be mindful that the social media team is representing CIS in all social media interactions. These concerns have been recognised by several national organisations. The PSI and IMO both highlight professional boundaries, privacy and confidentiality in their guidelines.

Conclusion 

The rapid growth in the use of social media provides both benefits and challenges to all healthcare professionals. 

Before embracing these tools, any organisation would do well to make provisions for the impact it will have on staff workload. 

Moreover, in some cases, social media training might be deemed appropriate if staff members are not already social media literate.

The introduction of social media has been a learning process for CIS. The creation of a policy proved a critical step, highlighting the need for confidentiality when necessary and a close working relationship between the CIS team and the Irish Cancer Society’s social network co-ordinator. 

It also provided guidelines for how to deal with sensitive issues in the public arena and the inevitable negative backlash that often surfaces on social media. 

Figures to date reveal a significant increase in our audience interaction this year. There was a 227% increase on 2012 figures during a similar timeframe (January-September 2013). 

Based on the success of our results, social media has been deemed an appropriate forum to deliver cancer information. 

The Cancer Information Service will continue to deliver cancer information and engage with the general public through social media, promoting cancer awareness and supporting patients, family and friends. 

Glossary 

• Likes: Clicking Like is a way to give positive feedback and connect with things you care about
• Shares/Retweets: Repeating a message because you think it is particularly good and passing it on to your friends/followers
• Comments: A person’s written response to your post
• Views: Number of people who have seen your message
• Favourites: Favouring a tweet is a way of bookmarking it for future use.

References

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