When Patients Take Control
Ever wondered what a pharma event created, designed and run by patients would look like? Paul Simms was curious, so he created the Im-Patient Conference
Over the past 10 years, patients have become a common sight at pharma events, represented both on stage and in the audience. They make presentation and take part in panels and ask questions from the floor, but they rarely have any involvement in what topics are under discussion.
This is all set to change with the first Im-patient Conference, kicking off at eyeforpharma’s Patient Summits in London and Philadelphia in October.
“Patient involvement in pharma conferences is vital – not only to hear directly from them (if we are to co-create meaningful experiences), but to hold pharma presenters more accountable for what they say,” says eyeforpharma Chairman, Paul Simms.
“Yet we are still designing conferences on behalf of patients rather than with them, or by them. That changes now. The patients that have designed this agenda are truly excited about seeing their vision coming to life, of being able to show pharma executives what they really mean, of how they hope to work with pharma in the future.”
As patient involvement moves from input to control, how does Simms expect the event to differ from a more regular pharma conference?
“One element I found interesting was how the patients were looking to discuss patient leadership within the conference as a primary goal. For example, they were keen to recruit the founder of Patients Included and other patient innovators, the kinds of patient that have taken an idea by the scruff of the neck and made it happen,” he says.
Conferences can be an ideal place to experiment with new ideas, says Simms, who launched the first ever Patient Summit back in February 2004. “The conference has often seen the first examples of patient leadership; for example, the Patients Included movement was initially focused on conferences but now you see it expanding into areas like clinical trials, which can now be labeled as Patients Included too.
“If trials follow the same trajectory, you start to wonder what a clinical trial created by patients might look like – how they design, recruit and operate such a study,” he adds.
The power of the conference will be truly tested next year, says Simms, citing a plan for the Barcelona conference in March – the Barcelona Treaty.
“I am disappointed by pharma's efforts to convince the world that their relationship with patients has changed for the better. Currently, it comes across like greenwashing [when companies used PR to enhance their ethical credentials]; each company issuing a ‘patient declaration’ or ‘social contract’ to try to win hearts and minds. Unfortunately, to patients it means very little; it’s simply another piece of corporate marketing. Nobody buys it for a second.”
Instead, Simms aims to create a treaty that encourages all companies in the industry to take a joint position.
“I started thinking – what has created an industry-changing difference in the past? I immediately thought of the Kyoto Treaty and Paris Agreement. I mean, a 50% reduction in carbon emissions? That’s an incredibly ambitious goal – a non-incremental goal, where we cannot envisage the solution at the time of commitment. If I asked you today to cut your emissions in half, you wouldn’t know where to start, but, because the agreement was over a long timeframe, it gave everyone time and impetus to work it out.”
Simms also drew on comparisons with the first moon landing, where a commitment to put a man in a lunar environment was made by a sitting president, prior to the necessary technology even existing. Yet it was achieved.
The Barcelona Treaty website is currently open for ideas on which goals to focus on, but Simms has some thoughts. “We need to be bold,” he says. “It needs to be something like, ‘We will eliminate prescription errors’ or, ‘We will prevent new disease’. Only with sufficient ambition will we will attract media attention. The Gates Foundation has done it successfully, effectively eradicating polio and working to eradicate malaria, generating a positive reputation in the process, so why not pharma?”
The virtuous cycle that drives real action starts with this ambition, he says. “Ambition attracts publicity. Publicity attracts transparency, and transparency attracts accountability. Finally, accountability tracks and ensures performance. If you don't get that chain right, the whole thing will fall apart. It starts by talking boldly and making promises. That is what will drive change.”
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