How can we use social media in palliative care research in an ethical way?

The use of social media has altered the way many of us live, and as such it has also altered the way we die. 

From a research perspective, social media forums contain valuable insight into the way we talk about death and dying, and living with a terminal illness. Online interactions – from blog comments to Twitter posts – could provide researchers with a vast amount of useful data. This information could be used to improve the way we support people living with a terminal illness.

Ethical dilemma

However, the way research centres source and use this information comes with some very serious ethical dilemmas, from concerns about peoples’ privacy and consent to using historical online content appropriately. Research carried out at the Marie Curie Palliative Care Research Centre at Cardiff University and coordinated by Dr Noreen Hopewell-Kelly, has generated some suggested guidelines.

To make sure social media is being used responsibly in palliative care research, our team has concluded that:

  • Peoples’ discussions that take place on the internet should be considered private, whether they’re posting a public Tweet or commenting on a Facebook page.
  • When recruiting people to take part in research, the process should be totally clear and questions encouraged.
  • Similarly, information about confidentiality and anonymity should always be given to participants.
  • Consent must be attained for the use of people’s content. Just because someone might post their thoughts online (for example, in a public blog), it does not mean permission doesn’t need to be sought.
  • Even if online social media content is very old (for example, a blog post from 2008), permission is still needed. This is problematic; so the use of historical content is not encouraged.

Finding new solutions

One of the most significant ideas the team came up with was the use of closed online forums set up specifically for palliative care research. This is when people opt in to take part in research through social media so they know exactly what their insight is being used for. This reflects the more traditional ‘focus group’ method, where people are brought together to be interviewed in person.

These points represent the first step to outlining better and more ethically sound research methods, so we can keep finding ways to better support people living with a terminal illness. We’re now looking to pilot and develop these guidelines in the near future.

If you're interested in finding out more about these issues, Marie Curie Nurses will be discussing the impact of social media on end of life care at We Get Together on 29 February. Come chat to us on our stand and tweet us at @MarieCurieEOLC.