Je Suis Un Patient via Eyeforpharma (Barcelona Pharma / patient World conference

Je Suis Un Patient

By Paul Simms on Mar 31, 2015

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

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

A sketch of Dr Anne Beal’s closing keynote by Stefania Marcoli of Frog

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.

· Conference twitter feed - #e4pbarca

· Pharmaphorum’s Barcelona Hub, with live-blogging from all 3 days

· Can Pharma and Patients Talk to Each Other? It's a Must! By Nuria Zúñiga, Lupus Patient

· The Havas Lynx Whitepaper

· Ashfield’s Live Storystream

· Cath Brassington’s ‘3 changes I’ll be making post-e4pBarca’

· Patients: “Come to the dark side!” by John Mack

· 'Janssen a double winner’ by Fierce Pharma

· 'UCB wins Customer Innovator and Lifetime Value Achievement' by Pharmaceutical Technology

Amazing blog post, to support Patient to Pharma collaboration

Alan (Wales) very proud to be part of the Patient panel

Another Fantastic Blog

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Apr 01, 2015


Patient engagement and the digital approach to patients, main themes of the Eyeforpharma conference in Barcelona

Eddie Chan, Global Head of Customer Solutions & Innovation at Sanofi, made one of the key statements at the Eyeforpharma Conference in Barcelona (24-26 March), attended by hundreds of executives of the global pharma industry. Chan defended that the industry should not limit itself to the production of medicines, and that it should start creating digital solutions for patients-especially patients suffering from chronic diseases. Chan justified his argument with data: "Only 14% of diabetic patients in America meet the control target of their blood sugar levels, blood pressure and cholesterol levels."

Photo: Eyeforpharma

It became clear during Eyeforpharma (#e4pbarca) that the digital revolution will change the way pharma companies work to the core. For example, and according to Eddie Chan, in a few years their revenue will not come only from selling medicines, but also from selling devices and digital programs aimed to help patients. "Digital patient support will improve healthcare and health outcomes. It will not solve all of our problems, but medicines alone are not enough to treat chronic diseases," he said.

The challenges of the digital revolution

This new digital culture, however, is not free of risks and challenges. The speed in which pharmaceuticals develop new drugs-it takes from 9 to 15 years to launch a new product-contrasts drastically with how fast digital innovation advances, producing new products in only 6 to 18 months. "They are opposite models," Chan stated. To him, the main challenges are the low speed and flexibility of this industry and its reluctance to taking risks. This is why it will be necessary to create new alliances between companies. "In this new framework," he stated, "we can't work alone."

Eddie Chan

Chan talked about some of the digital solutions for patients launched by Sanofi. Some of them are:Kidney Appetite, an app aimed to help people with chronic kidney disease (or their carers) understand how nutrition affects their condition and to monitor their food and liquid intake; Phosphorus Mission, which helps these same patients understand their condition with games; and ArtCoach, to improve communication between doctor and patients with osteoarthritis.

Other pharmaceuticals also introduced their digital products. Merck Serono presented Rebismart, a device that helps Multiple Sclerosis patients share with their doctor data on how they feel and how is the treatment going. This way, as Tim Keen, president of the company in Europe and Canada, explained, "Doctor and patient can spend more time working on the treatment plan instead of going over the symptoms and condition."


Dan Zavodnick, from Bayer Healthcare, talked about some interesting social media initiatives: Novartis' board on Pinterest focused on breast cancer, Janssen's Tumblr for people with aids, etc. "These initiatives," Zavodnick stated, "don't seek to promote products, but to increase people's trust and the industry's credibility."

Janssen's Tumblr for people with aids

People's perception and the reputation of the pharma industry were also under discussion. Novartis Director of Global Advocacy Keith Allan rubbed salt in the wound: "Despite the fact that companies are working with more patient groups than before our reputation hasn't improved." One of the ways to get to the public could be to stop referring to them as "patients" and start thinking about them as "persons", just like Doctor Anne C. Beal defended. She has recently been appointed Chief Patient Officer of Sanofi, a position most pharmaceutical companies have started to incorporate.

Anne C. Beal

Sinead Tuite, Patient Manager and Strategic Partnerships at MSD, also pointed at some of the industry's flaws: "Are we doing our best to engage patients or are we just throwing information at them?"

Pharmaceuticals asked for patients to trust them, to become active and to participate in their programs. In fact, one of the tracks of the conference focused on "Patient Engagement" and counted with the participation of renowned ePatients and Patients Advocates Jack Whelan (@jackwhelan), Andrew Schorr (@andrewschorr), Mike Young (@elgringoinspain), Nuria Zuñiga (@TuLupus), Juan Fuertes (@juanfuertesguil) and Alan Thomas (@alanROYGBIV).

Photo: Session "A new point of view: what do patients want from their relationship with you?"

Nuria Zuñiga at Eyeforpharma

Nuria Zuñiga, a lupus patient (a disease of the immune system) stated that "working together, patients and pharma, we can accomplish great things. If there is something I've learned from this conference is that we all have to break down the walls for communication. I sincerely think that the empowered patient needs to be taken into account." And that's because patients are not just an accumulation of symptoms and diseases, she said. Zuñiga also did some of self-criticism, and highlighted that patient associations often can't keep up with ePatients. Although only pharmaceuticals are accused of lack of transparency and miscommunication, according to her some patient associations also suffer from these issues. Zuñiga summarised her experience at the conference in her blog.

Mike Young with his smartphone

To Mike Young (@elgringoinspain), diabetes type 1 patient, it is "important that patients and doctors keep an open dialogue with the industry, but the rigidity of the current regulation doesn't allow for it." There's no doubt that Mike is an ePatient: "As diabetes patient, my life is data-driven," he stated. The smartphone is essential for his everyday life. He uses MySugar to keep track of his glucose levels, app Calculator to determine how much insulin he needs, Pedometer to keep track of his physical activity, and other apps, such as Medscape, to stay updated about diabetes. All this apart from his glucometer, produced by Abbot. As an ePatient, Mike complains that his doctors (in Torrevella, Spain), and the medical professional in general, "are not digitally literate enough and show no interest in being." In his blog, Diabetes in Spain, give his view of the congress.

Alan Thomas in the congress held in Barcelona last week

Alan Thomas, ataxia patient from Wales, was rather critical with the industry. His condition is caused by the dysfunction of the cerebellum and can result in speech impairment and extremities incoordination. Thomas was excited about the digital health revolution but complained that "pharma hasn't done anything for me." Thomas is a digital activist and founded the community Living With Ataxia."Twitter has increased my knowledge as a patient as well as my network," he explained during Eyepharma. His impressions of the conference are recorded in his Twitter account: @alanROYGBIV

The conference thoroughly conveyed the determination of the pharma industry to work together with patients. ePatients and pharma are convinced their alliance will generate a "win-win" situation and that is necessary for the future of global health. You can read more information on the event at the hashtag#e4pbarca.

Teresa Bau, Editor Mobile Health Global

Related news:


Alan Thomas, ataxia patient from Wales, was rather critical with the industry. His condition is caused by the dysfunction of the cerebellum and can result in speech impairment and extremities incoordination. Thomas was excited about the digital health revolution but complained that "pharma hasn't done anything for me." Thomas is a digital activist and founded the community Living With Ataxia."Twitter has increased my knowledge as a patient as well as my network," he explained during Eyepharma. His impressions of the conference are recorded in his Twitter account: @alanROYGBIV. "