Saturday, 27 September 2014

Banning patient advocates from parts of congresses is unconstructive and anachronistic.

The ultimate purpose of medicine is to serve patients. 

Only patients can tell us whether a treatment meets their expectations. In these exciting times, where break-through discoveries meet financial austerity, ignoring patients’ demands is a waste of resources that we as civil society should not tolerate.
Patient advocates are de facto health care professionals, providing patients with support, advice and information. It is therefore in all our interest that advocates have access to reliable, validated information sources and are as educated as possible to 

1. best serve patients and 
2. contribute the patient perspective in a maximally constructive way, so that we are reaching our goal- meaningful medicine for all patients.

The current situation at the ESMO 2014 congress where advocates are banned from certain areas of the conference is therefore both unconstructive and anachronistic. The very same advocates meant to require protection from the- highly regulated and checked for scientific and legal accuracy- promotional material for new drugs have already discussed the clinical trial protocols and set on the advisory boards when these very drugs underwent development.
Patient advocates attending scientific congress are highly motivated individuals who dedicate enormous amounts of their time- often unpaid- to educate themselves in order to help others. We as society ignore that expertise at our own peril.

Today, it is opportune for everyone in health to claim to have 'the patient at the centre' of all endeavours. For all of us as society to profit from the existing patient knowledge to build a better future, not only for today's but also for future patient generations, will require more than lip service.

Bettina Ryll

Founder Melanoma Patient Network Europe