The use of social media in clinical trials is something that has been increasingly prevalent in the last decade. However, as with many areas of technology in health, there are still questions over how best to use it, and concerns over ethical issues.
One of the sessions we are most excited about at Partnerships in Clinical Trials Digital Week (on 9 – 12 October) is Begonya Nafria Escalera, Project Manager at Hospital Sant Joan de Déu, speaking on the use of social networks to develop clinical research projects. During the session, she will be exploring:
- What is the cost/benefits ratio of social media?
- How to involve social media in healthcare and clinical trials
- The involvement of smart phone apps
- The impact and ethics of using social media for patient recruitment
Last year we spoke to Escalera about how she is working with technology to improve the patient experience. This is what she had to say about the impact that social media has had:
How is social media (and technology more generally) changing how clinical trials function and the role of the patient within them? What benefits can it bring?
‘Everyone is now a user of social media and patients aren't excluded. They generally have a high level of social media use; more than clinicians or researchers. We can't forget this fact, and we need to take advantage of it.
One of the main uses of the internet is to search information about health and in my daily professional field in pediatric rare diseases, families are very active in using social media. They are connected every day with families around the world through open groups on Facebook where they share information and questions about their child’s disease.
Families are fighting day by day against the disease, but also to find the right treatment for a better quality of life for their child. When we don't have any possible treatment for them, collaboration in a clinical trial is often the only option, for the benefit of future patients, even if perhaps not for their child.’
What ethical issues are there around using social media for patient recruitment?
‘The main ethical concern is the use of commercial open social networks. In these cases, the regulations are severe, as users can share health data in an open digital space without any option to anonymize it.
This is the reason we designed our own social media platform at the hospital that patients and families need a username and password to access. All the data is saved anonymously through processes that meet the personal data regulations. The data is stored on the hospital’s servers, with a daily system to record security copies.
These are the main ethical concerns over the use of social media for clinical research and trials, but they can be solved by the use of technology that guarantees all the regulatory aspects are respected.’