PFMD member Bettina Ryll, founder of Patient Melanoma Network Europe and Chair of the ESMO Patient Advocacy Working Group shares her views about the development of meaningful patient engagement in a video filmed at the DIA 2016 conference:

“Patient Engagement is currently one of the hottest topics in discussion – you only have to see what is on the agenda of healthcare conferences to see that. However, talking about patient engagement and engaging with patients are two very different things. In order to reach true patient engagement, we still have some way to go.

The ultimate purpose of healthcare and medicines, in general, is to benefit patients. Only a patient truly understands what it is like to be a patient and it is patients who may take substantial risks in clinical trials.

I do believe we are moving into a new era when it comes to patient emancipation.

Social media is making it easier to access knowledge that in earlier times would only have been accessible by going to medical school. Patients are utilising social media to inform themselves and then act upon that information, by for example, not taking part in unattractive trials. It is in our interests as patient communities to engage in the design of clinical trials to ensure that they are attractive and meaningful to patients.”

It is very encouraging to see what is being done at the level of our regulators. There is true interest in engaging patients in diverse processes at the European Medicines Agency (EMA).  We as the Patient Network have participated in research projects as collaborative partners with the EMA. I feel very hopeful because we are finding common understanding based on data.

Watch the video to find out more.

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