Last year, after the Doctors 2.0 and You Summit in Paris, I spent a lovely evening with some diabetes advocates, having a dinner of steak frites. Coming along for the ride were a couple of others who had been at the conference, including Michael Seres who is a patient advocate from the UK. Michael was diagnosed with Crohn’s Disease and, in 2011, was the 11th person to undergo a small bowl transplant. Michael speaks regularly about his story and about the importance of patient-centred care and patient engagement.
Apart from ‘seeing’ Michael on social media, we’ve not connected again. I regularly see his name coming up as a speaker at conferences and in interviews. Yesterday, trawling the Twittersphere, I followed the link on a tweet to an article about patient representation where Michael provided some great comments.
The article ‘Walk a mile in patients’ shoes: How to become truly patient-centric’ was saying how important it is for pharma to truly engage with patients. Michael says:
“Every pharma company should have a patient representative on their board. I don’t mean someone who would come in and talk to them for a couple of hours. It should be someone who lives and breathes the disease. At that point when they’re developing new meds, they would also learn how to provide all those other services that are important to patients, but that the healthcare system cannot fund”.
He’s right! Bringing in a couple of patients for a couple of hours is tokenistic at best; patronising at worst. The discussion needs to be ongoing and all aspects of living with a health condition need to be considered when new meds (or devices) are being developed. A two-hour focus group does not really equal patient engagement – especially if you’re talking about in the development of a drug or device that is going to a part of the patients life forever more!
Focus groups for new devices often focus on the design – do you like how it looks?/is this the right colour?/would you like the screen to be this way or that? etc. But patients have far more to say than whether or not the thing looks pretty. The daily functionality of my pump or meter – how easy it is to use – is what makes me love a device or want to throw it out the window.
Had people with diabetes been engaged at the development stage of the latest smart pumps, I suggest that things such as giving an alert telling you to check your ketones EVERYTIME your BGL is above 14mmol/l would be able to be turned off. Or, at least, set to a level of the user’s choice.
Meaningful engagement with patients is a win-win for all involved. We just need to find a way for that engagement to happen as part of the ‘normal’ development process.
I am an invited speaker at the eyforpharma conference in Sydney in October of this year. Details can be found here.