An Impatient Truth

How patients taught me that pharma’s partnership efforts simply aren’t enough

15 years ago, I introduced the concept of patient centricity at our first ‘Patient Summits’ in London and Philadelphia. At the time, the idea was somewhat alien; pharmaceutical executives were more interested in patient compliance, the science of getting patients to take their medicine as instructed, and driving sales through repeat prescriptions.

The existing language of the day was aggressive. It was all about ‘capturing’ market share and ‘dominating’ the minds of customers. I’ll never forget being berated by one delegate because a conference talk had deviated from the agenda – it had morphed into a story about the difficulties the woman had faced as a patient. “That was seriously off-topic; how am I going to report progress back to my managers? I seriously hope that won’t happen again, Paul.”

As an impressionable 22-year old, these harsh words hit home, and the conference remained resolutely ‘commercial’ for years. Yet, over time, the presence of patients increased – largely due to their proactiveness – and they were increasingly consulted in agenda design. The introduction of the Patients Included movement in 2010 provided a significant boost; now, a minimum standard of patient involvement was expected. But given that the primary audience was always to be pharmaceutical executives, others were always secondary.

This October, we made a breakthrough. Instead of pharma managers dictating the agenda, we handed over the reins entirely to patients. The idea quickly gained traction. It would be patients who decided the agenda, patients who hosted it, patients who decided what messages were communicated to the pharma audience. And totally justified, given that commercial and patient objectives should be one and the same.

“We are at the start of something wonderful. I believe that pharma and patients can work together in harmony.”  Not my words, but those of the conference chair as he opened the event. Matt Eagles, diagnosed with Parkinson’s aged 8, certainly didn’t let his disease get in the way of conveying his message. After the event, he was visibly moved: “The desire to succeed and change health outcomes was palpable; it will not be easy and there will be hurdles to overcome, but this is what makes us fearless!” He continued: “The beauty of this patient-curated section is that together we share the strengths required to succeed in partnership, and ultimately produce better health outcomes. Let’s make it count!”

His words were echoed by others. Carole Scrafton, who runs the Fibro Flutters portal for chronic disease patients, added: “When the advocates are all as one with pharma, boy, can we make the right noises to the right people at the right times! I feel so proud of the im-patient steering board for getting it right.”

Nurture, not nature
As I said at the start, this event has helped me recognize that pharma needs a new model.

Six months ago, I wrote a short piece about why I invited patients to conferences, aside from the obvious need to hear their stories, citing accountability, partnership and recognition as three underrated reasons.

But now, I realize I missed one out – possibly the most crucial of all.

So much of pharma’s efforts are aimed towards the holy grail of personalised medicine, ever more accurate and reliable medicines tailored to the recipient. We have largely believed that the gold standard of personalization will come when we can manipulate genetic information at minimal cost.

But genetics doesn’t tell us everything. Look at how disease has evolved in recent times. In China, 30 years ago, 0.67% of the Chinese adult population had diabetes; today it is more than 11%. Genes cannot evolve that fast – perhaps it sounds obvious, but something else is responsible for such a change.

Meanwhile, identical twins go on to have completely different medical lives, with sometimes one becoming obese and the other not. One develops a cancer and the other does not. It’s nurture, not just nature. The environment plays a huge role in the journey.

Genes are just the starting point, and the fully understood phenotype is arguably going to usher in personalized medicine more quickly than anything else. As Jamie Heywood, co-founder of PatientsLikeMe explains: “The vast majority of disease is connected to environmental, behavioral or other factors – into which DNA provides only limited insight.”

But if this is going to happen, patients need to be doing a lot more than raising a smile when they hit their 10,000 daily steps. They need to make data partnerships with scientists – with pharma companies – to enable this personalisation to happen. Sharing is the only way forward.

The platform era is coming
Ten years ago, the largest companies in the world included ExxonMobil, GE and other capital-intensive firms. They deployed a model we’re very familiar with – spend loads of money in R&D, apply plenty of blood, sweat and tears, and finally a new product is born. As we know, pharma companies still deploy much the same model, allocating billions to the lab in order to try and generate breakthrough drugs.

Today, the landscape of world-leading companies is very different. Alphabet (Google), Apple, Facebook and other tech-oriented firms now dominate the list of most-valuable firms. These companies largely differ from the previous list in that they don’t rely on their own capital investments. Instead, they rely on us – Google simply has the best algorithm to help you find the websites others have built, Facebook monetizes user-generated content, and, while Apple has great products, it relies on others to build the apps that create long-term engagement.

These are platform companies; not deploying their own capital has enabled them to be so profitable. The same applies to Uber, Airbnb and a host of other modern companies.

The future of the pharmaceutical industry also lies in our ability to enter the platform business. Only then can we partner properly. And there are seven billion partnership opportunities available on this planet.

Patients are smarter than you can imagine
Listening to the voices on the im-patient stage, the ingenuity and the passion of the patient and carer was hard to ignore. I learned how Jess Mills, daughter of former UK government minister Tessa Jowell, established a £40m brain-cancer research fund in her mother’s name following her recent death and changed UK protocol to enable cancerous tissues to be frozen for further study. I heard how Portuguese Professor Pedro Oliveira was compelled to develop a patient innovation platform because so many entrepreneurial ventures were being pursued by patients.

I witnessed patient advocate Kristina Figueroa and AstraZeneca executive Dawn DiCandilo express their love for one another on stage in a scene reminiscent of a wedding ceremony. I saw how Jen Horonjeff had reengineered the patient group into a co-operative structure so that ownership can be shared. I saw how Lise Pape, Dom Raban, Emma Lawton and Andrew Warrington had taken their disease experiences and built life-changing new products from them. And much more. Inspiring is an understatement.

These are not merely customers or consumers, or even partners. Pharma doesn’t just need to listen to patients, it needs to incubate and champion their ideas by adopting a platform model. That’s the level of collaboration required, and the missing link in pharma’s plans.

Thank you for being im-patient.

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