Using social media to support women attending for breast screening: a good idea?

It is clear that social media is here to stay. It’s easy to find statistics which prove this so I’ll resist the temptation to flood this blog with numbers however, salient to our project are these figures:  75 % of women in the UK, over 16, use the internet, and 68% of women in the UK, aged 35-44 and 54% aged 45-54 have a profile on sites such as Facebook or Twitter. So people are digitally connected especially those women who will be moving into the UK NHS breast screening population over the next five years. Our idea therefore is to use social media to support first time attenders for breast screening, or rather, to enable them to support each other.

Whilst the use of social media for supporting patients is nothing new, (for example, Medhelp which attracts 12 million visitors monthly, and PatientsLikeMe all provide on-line opportunities for patients to share their experiences),these support sites tend to be aimed at ‘patients’ rather than the asymptomatic screening population. Standard social media platforms such as Facebook and Twitter have also been exploited by patients themselves to set up their own discussion forums and support groups (see for example the excellent work Jo Taylor is doing with her ABCDiagnosis Twitter feeds and weekly tweet chats). However, searching for information about breast screening mammography yields fewer hits and many of the mammogram discussions concern the confusion that surrounds the outcomes of screening rather than explanation of the process itself. This is our WOMMeN (Word of Mouth Mammography e Network) site comes in.

Research has shown that women fear their first mammogram. This is for many reasons but mainly because they are not sure what to expect. As well as leading to a negative experience, this anxiety can lead to increased perceptions of pain. Although the NHS have produced a detailed patient information leaflet, this doesn’t seem to address women’s needs. Women in an earlier study told us this was too technical and concerned with statistics and figures rather than explaining what to expect. To be fair, it’s difficult to explain what to expect in a piece of written text. These days there are more appropriate ways!

We have conducted a feasibility study where women have told us that they would prefer visual information and would like to talk to other women and to health professionals. Collectively these women have described the potential for a multi-media hub which contains information about screening and breast health in a variety of synchronous and asynchronous formats.

During our research we also discovered some interesting issues about how and why women choose to disclose information about intimate body health which will significantly impact on the success of a WOMMeN hub. The next blog will explore these further. For now we have our work cut our for us. We need to find funds and expertise to help us develop a prototype for the hub.

We would love to hear your thoughts about our idea for a WOMMeN hub. Would you use it? What sorts of information do you think it should include? What format? Would you talk to other women about breast health and mammography?

We also have a WOMMeN Facebook site where you can engage in discussions about our ideas if you prefer,

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