Julie Walters discusses the Patients as Partners Event. Blog from our parters at The Conference Forum.

Putting the patient first: Time to stop talking & start doing

It’s rare that you find yourself in the right place, at the right time, with the right people. But it happened last month.

I was part of a small but determined group of people in Philadelphia ready to mount the pharma barricades and, in our view, talk sense.

The event was not just another industry conference. This one was called Patients as Partners and, now in its third year, it meant business.

The pharmaceutical industry doesn’t mean to be inhumane, but sometimes it just is. Regulations have tied good people so much in knots so that the following happens:

• No outcomes shared from clinical trials, even to those who helped to run the trial. It’s like taking part in a marathon and being told you couldn’t know your finish time

• No thank you’s to the real people who took the time and considerable energy to take part and try new medicines in development

• No personal data shared of sometimes invasive procedures like MRIs and X-rays. It’s like your data became someone else’s property at the doctor’s door

It’s nonsense, but how do we change such bad, ingrained habits? Like anything in the world, change takes a small but committed group of people.

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As one person put it so simply and clearly:
How would you like your mother to be treated if she took part in a clinical trial?

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Someone saying thank you at the end of the process would seem a good start.

Trailblazers are starting to make a difference: patient data delivered in real time to those who took part even while a trial is still ongoing. Yes it is possible! Not easy, but possible. Families affected by a condition in the same room as those developing new treatments so they can learn from each other. The lawyers are not comfortable but again it can be done. It has got to be better than observing patients talking about living with their condition from behind a two-way mirror. Not so much patients as partners; more patients as criminals.

The industry’s behavior is motivated by fear; fear of getting it wrong, fear of going too far, fear of being accused of trying to sell a family a drug years before it’s even been tested (yes really!) and fear of their career coming to an abrupt stop.

I understand how it’s come about but this fear-based approach is no longer fit for purpose in a world that now has the technology to truly share experience and knowledge.

So if your colleague attended #Patients2016, ask how you can help & wish them luck. We’ll need it.

“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” Margaret Mead