The Great Debate: Should we use social media to recruit patients in clinical research?

Eeek the Agenda has been published for the annual Clinfield Conference for Clinical Research Staff.

Guess who’s speaking and part of the panel debate? Meeee….

“11:45-13:00 The Great Debate: Should we use social media to recruit patients in clinical research?
Chair: Gordon Hill Debaters: Teresa Chinn- We Nurses, Anna Wallace- patient representative, Les Gelling- Ethics Chair”

As always it will give me the ability to mention ‘Phyllodes’ and this occasion to a room full of people at the coalface of clinical research.

As you will all know from this website social media has played a huge part in my finding other people diagnosed with Phyllodes; sharing experiences and supporting one another; researching medical/scientific papers and sharing them with the group; discovering clinical trials around the world and again sharing them with the group; and so much more.

I know that when we’ve discussed clinical trials and research within social media, the thirst for knowledge, how to sign up and get involved and interest in any results and findings from group members is enormous.

Using social media as a way to recruit patients into clinical research is a no-brainer.  It should also be used to educate and inform patients on what research is; what and how you could be involved; why it’s important for medical advancement for you and others; etc.

My ‘journey’ would have been a very different one had social media not played a part.

I’d love to hear your comments.

2 thoughts on “The Great Debate: Should we use social media to recruit patients in clinical research?

  1. One of the problems with rare diseases seems to be that the researchers only ever have access to a very small number of patients – in our case, particularly those with malignant tumours. Therefore any results are based on small samples which by their very nature are unreliable as a basis for future treatment decisions. By using a patient support group, the call could go out for patients to sign up to share their medical history with a researcher and immediately make the results more robust. Obviously this would need to account for possible biases (age of those using social media for one) and ability for patients to be able to easily share their medical information with a third party needs a lot of work (making it easier to get hold of your own medical records as a patient would be a good start!).

    • I absolutely agree Laura. I think social media can play a huge part in reaching the minority cancer groups, gaining quick responses and replies to polls or questionnaires, can assist with reviewing information to ensure it’s patient/carer friendly and the terminology is understandable; and gain access to a group who may already have tumour samples excised that would be useful for lab research (or upcoming biopsies and excisions).

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