Gemma is one of a new breed of patient activists; she mobilised both on- and offline during what became a fraught and high-profile negotiation to get access to Orkambi on the NHS.
As a revolutionary new treatment for cystic fibrosis – a nominally rare disease – Orkambi stumbled on every access hurdle, culminating in a protracted and very public spat between manufacturers Vertex, NHS England and the Government.
Patients and families felt caught in the middle of a seemingly never-ending battle and they were not going to take it quietly.
Earlier last year, another patient community ran out of patience, too.
Billy Caldwell’s mum, Charlotte, wanted to get her son legal access to medicinal cannabis to treat his severe epilepsy.
Organising both within and outside the traditional advocacy organisations, she led a high-profile media campaign, and Billy’s story undoubtedly fast-tracked the legalisation of medicinal cannabis.
Like with Orkambi, patient activists pitted ministers against the suffering of their children and demanded change – fast.
The mass-mobilisation playbook that had taken politics by storm with Momentum and Extinction Rebellion is now playing out on a smaller scale in healthcare.
In both these campaigns some organic clustering of individuals and communities took place, some happened through more radical anti-pharma movements, and some with co-ordination by the established patient advocacy organisations.
What does any of this have to do with LEGO?
Back at the beginning of the 2000s, LEGO was logging its largest losses for years and possibly facing bankruptcy.
Its central efforts to be relevant again to its customers were not working. That is, until it asked its customers.
LEGO embraced the then-novel idea of crowdsourcing, setting up open innovation platforms like LEGO Ideas and LEGO Mindstorms, where customers became collaborators and co-creators.
Senior management was resistant at first, even thinking that some of the online collaboration could be illegal.
They were quickly convinced by the results leading directly to LEGO’s financial success and cultural significance today.
Radical back then, normal now, customers and citizens are used to entering, and frankly expect to enter, two-way, co-created, open networks.
This is how pharmaceutical and other health companies need to respond and evolve in their patient advocacy engagement.
Be more LEGO – open up and let patient advocacy groups be a driver, not just a passenger, in your aims and campaigns.
Accept it is not a tidy movement based on ‘how we always do things’. Some may not even want to know what the ‘things’ are (HST NICE reform anyone?). They just expect to be heard because that’s what their social-media activism gives them – a voice, a stake and their own LEGO bricks to build into your campaign.
Roudie Shafie is a director at Ovid Health and former head of government affairs at the ABPI
Thumbnail credit: 3d_kot/Getty Images
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