Why pharma’s focus on patients requires less patience

Have you missed me?

I certainly wouldn’t be so egotistical to assume that anyone has, but bizarrely it’s been well over a year since I wrote an article for my own publication. There is no real excuse, other than the fact that things got pretty busy last year as our readership expanded rapidly and demand for our consulting services also took off.

But two people inspired me recently to once again make time to pick up my digital pen, both of whom recently published interesting pieces on my favourite topic – patient engagement – and both of whom I’m pleased to say will be featured authors in pharmaphorum in the near future.

Mike Rea, CEO of IDEA Pharma, wrote a great article on LinkedIn, entitled Patients: At the centre, but out of reach, which essentially implores the pharma industry to ensure it doesn’t treat patients like a single homogeneous group, but to instead understand the individual person that every ‘patient’ is and everything that goes on in their lives, not just their disease and treatment.

To do so, is to properly start to understand how to make things better. It’s well worth a read.

Guy Yeoman, founder of the consultancy MediPaCe (which unsurprisingly helps pharma companies integrate patient engagement into drug development and commercialisation) went a stage further and published a book, co-authored with Mitchell Silva, founder of cancer support community, esperity.

Patient Engagement for the Life Sciences is a culmination of Guy’s work in medical roles, both outside and within the industry, including his most recent big pharma role in driving the global approach to patient centricity (PaCe as it was branded) at AstraZeneca. It’s billed as a practical handbook for incorporating patient value into commercial healthcare organisations and, in brief, it lives up to that expectation.

I remember first meeting Guy as a guest at one of his early launch meetings for the AstraZeneca PaCe group a few years back. As an event designed to help the company define the right patient engagement strategy, it ticked a number of boxes, most notably having both representatives from patient organisations and patients themselves in the room sharing their perspectives. The passion for genuine change was there, which was a great starting point.

However, relying on this passion alone when it comes to embedding patient engagement into large pharmaceutical companies is a bit like trying to change the course of an oil tanker using a small band of enthusiastic folks with oars stuck out the side of the boat.

The book therefore seeks to address this reality through a logical approach of first describing why patient engagement matters (for companies, not just the patients themselves), then how it can be delivered through both business process and cultural/structural transformation.

Without giving too much away (I’d recommend reading the book), the ‘why’ aligns with many thoughts I’ve expressed before, most notably that in a world where medical interventions are increasingly valued in real-world outcomes it is folly not to deeply understand, from a very early stage, the real world you’re launching them into. This has to go beyond ‘market research’ into more direct, continuous patient input or you risk missing something pretty vital (and the book includes a good horror story of what this can look like in pharma).

The ‘how’ then provides some common definitions of patient centricity and the 3i model for patient engagement (insight, innovate and impact). Following this is a clear organisational framework for companies that details how to embed patient insights into external ‘deliverables’ (trials, medicines and patient support programmes) and internal capabilities to consistently collect and integrate such insights.

Like all the best solutions, it’s pretty simple, but I suspect may not be obvious to many working in pharma who believe in the power of patient engagement but are struggling for a way to change the course of that proverbial oil tanker.

For me, arguably the most important part of the book comes right at the end, where the authors provide some insight on the key factors underpinning success – helping senior leaders understand the value of patient engagement and a clear roadmap for delivering the organisational change needed to become patient-centred.

So, if everyone in positions of influence reads this book will we suddenly see all the talk of being patient-centric (which has been part of the pharma PR lexicon for quite a while) suddenly translate into the organisational change needed?


For me, there are two major barriers remaining, neither of which the book has an answer for – and to be fair nor would I expect it to because it’s a pretty complex problem.

The first outstanding challenge is the short-termism present across many industries, driven by shareholder expectations and the focus on quarterly results. Patient engagement delivers most value when it influences the development process right from the very early clinical stages, where an investment in change won’t deliver results until at least 5-10 years down the line.

Secondly, as patient input shifts the R&D process, we need regulatory and market access systems that can understand the kind of trial endpoints that matter to patients, not just physicians, and the two are not always aligned. Efficacy remains king for most trials, but safety, tolerability and convenience can be more important for patients, rather than side considerations.

Addressing both of these challenges requires different conversations with shareholders, regulators and governments, which I think we are starting to see, but they need to happen more often – and more rapidly.

Patient Engagement for the Life Sciences provides an excellent structure for those wishing to embed PaCe, patient centricity, into their commercial organisation, whether in the R&D or commercial area. I hope it will also provide more ‘pace’ to senior leaders, regulators and governments in driving new approaches to medical R&D and commercialisation that are vital for giving patients what they really need.

Without systemic change, commercial companies can only do so much. It’s time for everyone to show less patience when it comes to taking patient engagement seriously.

For details of how to obtain a copy of Patient Engagement for the Life Sciences, visit medipace.com/book

About the author:

Dr Paul Tunnah founded pharmaphorum in 2009, which is a content and communications company offering industry leading publications (www.pharmaphorum.com) and a strategic consultancy (www.pharmaphorumconnect.com). He is a recognised author, speaker and industry advisor on content marketing, communications and digital innovation, having worked with many of the world’s leading pharmaceutical companies and the broader ecosystem of healthcare organisations.

Connect with Dr Tunnah at https://www.linkedin.com/in/paultunnah/ or email paul.tunnah@pharmaphorum.com.