Tunnah’s musings: building the right relationship between patients and pharma

This month, Paul Tunnah is cautiously optimistic that the value of engaging with patients is starting to be recognised across the pharmaceutical industry, but muses on how this should be a genuine, productive, two-way dialogue and not just meaningless PR.

Perhaps it's the fact that summer is looming large on the horizon, but I'm feeling cautiously optimistic that the patient voice is finally starting to be properly integrated into the work the pharmaceutical industry does – but with one cautionary observation.

Before the defensive cries of 'but our focus has always been on the patient' begin, let me just clarify that I'm talking about actively involving the patient – in how companies do research, how they position products, how they build services around them, how they communicate complex medical issues etc. This is different to trying to develop products and services that help patients, which has always been important for those that work in pharma (or at least most of them, most of the time).

"I am seeing more and more patients attending, and being actively involved in, conferences and medical congresses"

My optimism is driven by a number of factors, such as the rise of roles aimed squarely at ensuring patient input, especially the recent emergence of Chief Patient Officers, who are aiming to reengineer the entire drug development and commercialisation process around patient insight. Another factor is the fact that I have witnessed a far greater level of open (e.g. tweetchats) and closed (advisory boards, closed forums) media, which allows patients to directly impart their real-world experience to those working in the industry.

Perhaps one of the strongest indicators of this shift is the fact that I am seeing more and more patients attending, and being actively involved in, conferences and medical congresses. Indeed, the Patients Included initiative, which lays down ground rules for events being appropriately patient inclusive (and which I wrote about recently for Healthworks Collective), is aiming to bring the patient voice into every health-related meeting.

However, this links me back to my cautionary observation, which is articulated most excellently in a piece flagged to me over on The BMJ, called 'David Gilbert: Patient as expert'. I'd recommend reading the full piece, but one aspect of it is where he talks about his experience of being invited as a 'patient expert' to an event. Flattering as this may seem, he ended up feeling a little bit like a trophy along the lines of 'look at the patient we have at our event, aren't we patient-centric?'

"Flattering as this may seem, he ended up feeling a little bit like a trophy"

It's something I have observed at other events, where I'm sure the intention is good, but it can come across as bit of an attempt to be cool, rather than actually making sure there is real benefit on all sides to patients being involved (something Patients Included seeks to address). Another observation is that it can lead to industry attendees and presenters trying to outdo each other as to who can come across as the most patient-centric. None of this is helped by the somewhat 'rock star' status bestowed upon some of these high profile 'epatients' by others – something that, in my encounters, they never seek, nor want. They're just regular folks dealing with a medical condition as best they can and trying to share their experience to help themselves and others.

The trap that can easily be fallen into is in involving patients as a PR exercise, rather than for genuinely productive purposes, which is a problem that extends far beyond events. How often are over-used terms, such as patient centricity, patient engagement and patient outcomes (and yes, I know I'm probably guilty of that too) used on corporate websites and media simply because it feels like it will make the right impression? Companies seem to be falling over themselves to demonstrate who can be the best friend to patients, but patients don't want to be friends with big corporations, in the pharma industry or beyond; they want things to improve for themselves and others in a similar situation. This can only be achieved by ensuring their personal experiences are shared, listened to and integrated into all the other insight available to drug developers. They want to discuss their challenges with real people inside the industry who can make a difference.

"Too much 'patient PR' and the summer of patient engagement will turn into a winter of discontent"

Let's come back to the positives. It is good to see the pharmaceutical industry embracing this new direction around patient engagement, which can allow it to incorporate real-world insight into its work. Inevitably, in doing so, mistakes will be made and companies will sometimes find themselves on the wrong side of the line between mutually productive involvement of patients and PR exercise.

But my closing thought is this: patients are wise to this and so everyone who works in the industry should be as well. Too much 'patient PR' and the summer of patient engagement will turn into a winter of patient discontent, with trust for pharma sinking lower. So, challenge whether every activity is genuinely a meeting of minds and objectives between patients and pharma, keep listening to patients and keep learning from them.

Until next month, stay well.

About the author:

Paul Tunnah is CEO & Founder of pharmaphorum media, which facilitates productive engagement for pharma, bringing healthcare together to drive medical innovation. It combines industry-leading content and social media engagement services with the globally recognised news, information and insight portal pharmaphorum.com, working with pharmaceutical companies, service providers and broader healthcare organisations to help communicate their thought leadership and connect them with relevant stakeholders.

For queries he can be reached through the site contact form or on Twitter @pharmaphorum.

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