Empowered patient 2.0

17th of March, 7.15 AM Ternat. A crane has fallen on the railway track between Ghent and Brussels. The morning rush hour is going really slow due to the accident. Result: Magali and myself arriving only just in time to get our presentation copied to the central PC before the start of the first keynote session ‘Patients’ rights and e-health research’ of Prof. Dr. Herman Nijs, Director of Centre for Biomedical Ethics and law. Over the years, the professor has built up a solid expertise in cross-border patient rights. All in all a very complex subject – as ‘legislation’ always is for laymen in the matter. But what catches our attention in this story is an important common-ground with our beliefs: patients are empowered and they want to have a real say in their health management, no matter where they come from and where they are when the need occurs. Indeed, present-day consumers are becoming true global citizens and also health provision must be tuned to needs like cross-border health insurance for modern ‘nomads’, monitoring of silver patients travelling back & forth between their homes and holiday houses…
A lot of lawmakers are breaking their heads over these and other issues (like what about international donor organ waiting lists) and I – a true Generation Yer who is not defined by geographical boundaries – feel secured that experts are figuring out these things for the future.
Then it’s up to Angelika Joos, Head of Regulatory Policy Merck Sharp & Dohme (Europe) discussing ‘Transparency and disclosure of clinical trials and results’ in which she brings attention to the trend towards more transparency regarding the disclosure of clinical trials. The public is asking for more openness and the Industry has to act upon it. Angelika mentions one of the key challenges of clinical trials today: efficient and successful recruitment of patients. And this very much ties in with our story. The frustration of the industry – of not finding the right patients in sufficient amounts in due time, is very much shared with those patients – not being informed well about the clinical trials they are eligible for. This is the mere reason of existence for certain patient platforms that are growing online today.
And then there was Magali. Being in the unfortunate position to come right before the first break, she inclined everyone to stand up. An immediate buzz spread across the room yet everyone joined in and stretched their legs. Magali then asked if everyone who was NOT sending out messages from the conference to the outer world via Twitter could sit down… And guess what happened? All of a sudden everyone sat down again! This is at least somewhat surprising for a conference with an e-health focus…
 
And thus the tone was set for an inspiring and eye opening presentation that stood out from the others in tone of voice and visualization. Magali started off on a very personal note, showing a picture of one of her passions in life: her 6 month old baby boy Wolf. It turned out the little one had been diagnosed with RSV a while ago and via her own personal case she illustrated the empowered patient 2.0 who is standing up and claiming more insight and involvement in the management of their health and that of their beloved ones. A personal search path led us via Google Insights for Search, Wikipedia pages about nebulizer products (often not critically checked by the industry), YouTube movies posted by other young parents (with tens of thousands views from all over the world!), to a Tweetdeck tracking of the molecules Wolf was prescribed.
The new media revolution is undoubtedly the key driver for patient empowerment and they are, just like Magali herself, massively relying on Doctor Google to assist with their quest for more health related information. Did you know that 95% of patients on a global level who use the internet for health related searches (which is 1 in 2 consumers you may bump into in the supermarket on a regular day) is using Google for health inquiries! By showing screenshots and concrete cases she was able to give the attendees a wakeup call regarding the fact that often they are completely unaware of what is searched and said about their brand and products online by patients/ consumers.
After this, a well deserved coffee break followed by a presentation of Ingrid Maes, Director of PwC regarding the economic footprint of clinical trials in Belgium. Belgium is known for its high quality research and short authorization procedures however it seems stiff competition from Eastern Europe is rising to perform clinical trials there. Completely in line with this is the presentation of Monique Podoor, President of BeAPP about the initiative to promote Clinical Trials in Belgium.
After a delicious walking lunch à volonté, there were three parallel interactive sessions in the afternoon: in which the 300 attendees were split up in smaller groups.
We were of course especially interested in the story of our colleague market researcher Jan Callebaut of Why5Research and were pleased to hear quite a few analogies with our story: that the empowered patient has become ‘incontournable’.
And this patient is just a consumer in his daily life who shops for private label brands just like he buys generic medication. Of course it’s not as simple as that – health links to a higher involvement compared to ‘cream cheese’– however health marketers should dare to ask themselves these questions when it comes to branding their products! Molecules also have the potential of becoming strong brands.
To sum up: E-Health Care, E health research, the empowered patient, Doctor Google, clinical trials in Belgium, disclosure of clinical trials

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