An impatient truth

Patients have taught me a lesson: pharma’s partnership efforts don't go far enough.

Back in 2004, I introduced patient centricity to the audience at our ‘Patient Summits’ in London and Philadelphia. The idea was somewhat alien; pharmaceutical executives were motivated by patient compliance, the science of getting patients to take their medicine as instructed, and driving sales through repeat prescriptions (the word 'adherence' had yet to be coined at this point).

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, this feedback hit home, and the conference remained resolutely ‘commercial’ for years. Yet, over time, the presence of patients increased, 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.

Breakthrough

This October, we did something different. Instead of pharma managers dictating the agenda, we handed over the reins entirely to patients. It would be patients who decided the agenda, patients who hosted it, patients who decided what messages were communicated to the pharma audience.

“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, 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!”

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 impatient steering board for getting it right.”

Nurture, not nature 

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 realise 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 personalisation 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%. This is not down to genetics. Something else is responsible for such a change. 

Identical twins often 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. As Jamie Heywood, co-founder of PatientsLikeMe explains: “The vast majority of disease is connected to environmental, behavioural 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.

Patients are smarter than you can imagine

Listening to the voices on the impatient 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 impatient.

The next impatient conference is planned in Barcelona on March 12-14, 2019. Visit www.im-patient.com to get involved.