Je Suis Un Patient
I realized something new as the latest eyeforpharma Barcelona conference came to a close.
Paul Simms with the Patient Panel and Jill Donahue of EngageRx
I realized that while eyeforpharma advertises ‘learning’, ‘networking’ and ‘benchmarking’ as the key returns from spending three days at the event, the most important thing is missing from that list. Those who stayed right through to the end will know what I mean when I say we were experiencing something more. Something I call ‘belief’.
Belief in a new model, a new way; that it is the right way, and that we are not alone in thinking it.
Five people who embodied this belief by the last day were Alan, Mike, Nuria, Jack and Juan. Five nervous individuals who attended for the first time. They made up the patient panel, who during much of the event had the privileged position of contributing questions for each speaker before anyone else, perched at the front like accidental judges on X-Factor or America’s Got Talent. Of course, they were far more humble and amenable than Simon Cowell and his ilk. But what is more noteworthy is that none of them were believers at the beginning. In the final seconds of the conference, I decided to hand them the microphone:
"What the hell am I doing here?” That is what I thought on the first day at this conference. I felt really bad. I felt I was visiting ‘the dark side’. But now, I am telling everyone I can! - Nuria Zuñiga, Lupus Patient
It's exciting and encouraging to be able to talk to so many people on an equal level, which doesn't happen at home. Just don’t stop it here: keep collaborating and let's share the outcomes at next year’s conference - Alan Thomas, Ataxia Patient
I really have to admit that I'm very surprised. My views have evolved. It has been so refreshing being able to actually see that pharma is doing something to get closer to patient needs. There is a will. What once was a phrase used only as a marketing tool is starting to become reality: 'we are all about the patient' - Mike Young, Diabetes Patient
It struck me that all that these five people had witnessed was, simply, pharmaceutical managers talking to other pharmaceutical managers. Nobody had tried to convince them, to sell to them, to dupe them. They had simply sat at the front of the room and listened. Through that exposure, five people who started as sceptical, embarrassed, frightened patients had become passionate, energized and emboldened advocates. They became aware that the pharmaceutical industry was now an open door, they knew what they had to do next, and they wanted their cohorts back at home to feel the same way.
Just as we created solidarity with the Parisien workers who fell victim to terrorists at the start of the year with the phrase "Je Suis Charlie", it's time now to become as one with our ultimate customer: "Je Suis Un Patient".
Nothing has given me a greater sense of pride since I began my time in the industry about 12 years ago. What this means is that we are finally heading on the right track, en masse. We need to continue in this direction. I have been told not to be modest, and express pride that Barcelona has become the go-to meeting place for (without it sounding like a quasi-evangelical experience) the 'believers' in this new commercial and ethical model.
But there is so much work still to do. While there were nearly 900 people in Barcelona, the number of industry people who didn’t attend was far higher. A lot of people back home simply didn’t experience the transformation. These are the people who will hold us back the moment we reach terra firma. And just as we created solidarity with the Parisien workers who fell victim to terrorists at the start of the year with the phrase "Je Suis Charlie", it's time now to become as one with our ultimate customer: "Je Suis Un Patient".
This goes both ways. The patient panel noted that pharma managers were just as scared to talk to them, as they were to pharma. They saw that the most senior of industry executives were people first, and business people second. David Loew may well have sparked this realization in his opening session when he showed through audience participation that we are all affected - there is no 'us and them'. Yet you will still encounter resistance back at home. When it happens, recall the panel sessions from the first day. C-Level executives from several pharma companies made a public commitment, even in the face of questions like: “can you prove you're prioritizing patient interests even when there is no business case for doing so?” and, “are you prepared to fire successful but cynical employees that don’t prioritize patients above financial goals?”
Then, recall that the winner of Tuesday’s Lifetime Achievement Award was Roch Doliveux, former CEO of UCB, a man who spent much of his early career believing he was ‘too soft’ because he found himself unique in wanting to prioritize patient experience - and in doing so, tripled the value of his company. Once you’ve done that, recall the sessions from the tracks, which contained the practical know-how necessary to make those changes. (If you need some of this material verbatim, anyone who bought a gold or diamond pass gets a full recording of the entire event. Get in touch if you want to upgrade.)
Success is when every person in the organization has the mentality: "I am a soldier of the patients' will" – Dr Anne Beal, Sanofi, Closing Keynote
If the industry is going to change, and we get a reputation for this positive change, the change needs to happen in all of us. We are trying to make it easy for your colleagues to share this experience. As well as the next Barcelona event in 2016, we have similar events coming up in Philadelphia (very soon), Toronto, Tokyo, Miami (for Latin America) and Sydney. We’re just about to launch in South Africa and we have our Patient Summit in London in June. We have Patient-Centric Clinical Trials shortly, also in London. If you want your colleagues to believe as you do, let them know.
I have already received suggestions for how we can go a step further for 2016. For example, there was disappointment that the payers we brought along were reluctant to commit financial support for our innovation for patients – perhaps we should have a payer panel at the front of the room, next door to the patients? Some said that they wished colleagues from regulatory departments could attend, but couldn’t justify the price for them. And some said they wanted to be able to help set the agenda in advance. I need more of your suggestions to ensure it’s useful for you to come back next year – please write to me directly on email@example.com
And finally, a sombre note. We understand one Bayer employee and the wife of another was on the flight which crashed heading out of Barcelona on Tuesday morning. We understand Bayer staff held a memorial the very next day at their Barcelona office, the same time as the second day of the conference. We want to offer our condolences. Our thoughts are with the family, friends and colleagues of those who lost their lives.
A world cloud showing the most frequent mentions within conference-related tweets, courtesy of Martin Callaghan
At one stage, the conference was even trending amongst mainstream news.
Some more write-ups and summaries from those who followed the conference. If there are any that I’ve missed out, get in touch and I’ll add it to this list.