Patient engagement is not just a swipe-right

In less than three weeks’ time, the im-patient conference will run again in Barcelona. This is an event designed, hosted and managed by a steering board of patients and is completely independent from the bigger event in which it sits. The aim, of course, is to provide the purest form of ‘what patients want pharma to know’, and for that reason alone, it is worth witnessing. I hope to see you there.

Feedback from the inaugural session last October was that, as a ‘first date’, the flirtation worked – enough at least to guarantee a second outing. The inspirational presentation(s) and tantalising flashes of a potentially exciting future clearly made a passable impression, but now it’s all about moving beyond a superficial world of ‘swipe-right’ attractiveness.

So, how do we progress to the next stage with authenticity? Can we build towards something enduring? After all, we mustn’t overpromise in our jejune enthusiasm for a new phase of effective patient engagement.

In it for the long-term

Lifelong commitments made between the pharmaceutical industry and patients must be sustainable to provide meaningful change. That means embedding the systemic components that underpin all of our relationships – trust, knowledge, honesty, plus a belief that it must persevere once the courtship and the initial spark has faded. Patient engagement must be a relationship rather than a one night stand, and that means having structural reasons why a continued partnership is a genuinely worthy exercise for both sides.

So, at our second date in Barcelona, the patient steering board has courageously asserted to get down to the nitty-gritty and tackle the mechanics of making lifelong engagement work. The honeymoon period is already over; it's time to progress. Perhaps we will even experience that ‘first tiff’ when imperfections are exposed and partners seek to deepen their bonds by figuring out, warts and all, what is in it for them. Certainly our agenda includes fewer flashy presentations and more earnest roundtable discussions, panels and fireside chats – with no hiding place.

There are real trust issues to overcome. For instance, Emma Sutcliffe, our favourite patient polemicist, talks about the new phenomenon of ‘trial sinking’ where patients and carers engage social platforms to unblind trials because, frankly, they ‘don’t have time to stick to pharma’s rules’. What are we doing to stop this becoming habit?

Advancing the love cycle

Experts in personal relationships detail the key stages as; the romance stage, the power struggle, the commitment and the bliss/co-creation stage. Which part of the cycle are you in?

We have had at least a decade of first-stage red-hot flushes from pharma, showing at least a fleeting hunger for a swipe-right. But what deeper relationships are we looking at beyond that, and can we include the caregiver, younger patients and others? How can we manage the provocative subjects of data stewardship, privacy and fair market value in an equitable relationship that recognises patients, and the data they provide, as disease area experts? These are all essential components of our future relationship.

Admitting impediments

If Shakespeare’s famed Sonnet 116 is to be believed, then a marriage of two minds can ‘look on tempests and is never shaken’. So, thank you to the patient steering board for being willing to surface impediments and invite progressive mindsets to test how committed we really are.

But the second date will also include some new experiences. For example, Ruth Wilson and Carla van de Guchte of Person Before Patient are bringing an interactive, walk-through ‘Story of Health’ to the venue. Carole Scrafton will be giving pharma companies a very honest picture of what collaboration should be like.

So, brace yourselves. The im-patient conference will force you to go beyond swiping right – and commit to the beauty of long-term patient relationships.

To learn more about eyeforpharma Barcelona on March 12-14, click here.