Centre explores social media use in palliative care research

A Cardiff research centre is redefining the way social media postings from people affected by terminal illness are used in palliative care research.

Staff at the Marie Curie Palliative Care Research Centre at the Cardiff University School of Medicine have drawn up new ethical guidelines to help researchers looking to use social media data in their work. The guidance has been put together as part of a new paper - Palliative care research centre’s move into social media: constructing a framework for ethical research – which examines the ethical and practical challenges of using social media data for palliative care research purposes.

There is a wealth of data produced by people who share their experiences of illness, death and dying through blogs, microblogs, internet forums and social networking sites. But while social media content has been used for research purposes in the past, there has been no clear ethical guidance for researchers interested in using social media.

Now the team of researchers at the Marie Curie Palliative Care Research Centre have led research to construct guidelines they hope will help enable ethical palliative care research across social media. The research team now hope to engage with the wider research community to agree to use these guidelines to guide their work. Part of those plans would include exploring the idea of ‘closed forums’ with patient and carer users of social media.

With more and more people considering their digital legacy – what happens to your online presence after you die – this new research could lead to a change in the way people view their use of social media.

Dr Noreen Hopewell-Kelly, author of the consensus paper, said: “We conduct our whole lives, and even die, online now. Social media is rich with people sharing their experiences of illness, death and dying, and this content is interesting from a research perspective. That means there’s a massive responsibility for anyone conducting research in this area, whether it’s real or virtual, to ensure we maintain good working practice and protect our participants, and that’s what these guidelines hope to achieve.”

Dr Annmarie Nelson, Scientific Director of the Marie Curie Palliative Care Research Centre, commented: “These ethical guidelines have been put together to respond to a need. We were looking to do some internet research and draw from social media, but when we were looking for ethical guidelines we discovered that there weren’t any, only recommendations.

“As a Director of the Research Centre the wellbeing of our participants is paramount, and it is our responsibility to protect the people involved in our studies. We were uncertain about the use of social media, without consent, in our research and decided to explore the issues more fully.”

Sabine Best, Head of Research at Marie Curie, added: “Social media is being used widely in the palliative care research community and it is to their credit that our Cardiff centre is tackling its ethical challenges.”

For more information about the Marie Curie Palliative Care Research Centre in Cardiff, please visit www.mariecurie.org.uk

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