Welcome to ‘Generation R’ for the next decade of patient engagement

Relationship recrudescence; inertia, cynicism and complacency must not prevail, says Nexgen Healthcare Communications’ Emma Sutcliffe

“Are patients too close to industry?” was a comment at a recent meeting that had me reaching in fury for my ‘interactive keypad’ in response. This recrudescent pantomime- casting of pharma-as-villain was disappointing. However, it was not surprising, as there is still reluctance to invest comprehensively in patient engagement programmes that fully engage patients from the R&D get-go, which leads to such inevitable archetyping.

You would be forgiven for thinking that given the plethora of reports, events and multi-stakeholder organisations publishing guidelines that ‘good patient relationship practices’ are routine and that the cynicism shrouding industry-patient partnerships is the ‘ghost of Christmas past’. Indeed, it would be reasonable to assume that the relationship between most pharma and patient organisations is now a great one; underpinned by trust, measured by collaboration, linked with a common language. However, inertia to turn relationship ambition into practice still prevails in many companies that can frustrate and undermine the success of longer-term partnerships. Scratch away at the superficial claim ‘we put patients at the heart of all that we do’ and what does that mean, every day, in every pharma company away from the glare of the conference spotlights?

Pharma still needs to breathe ‘real life’ into patient engagement

As head of patient engagement at Nexgen Healthcare I’ve transferred some twenty five years experience as a medical writer into shaping the services that the agency offers. Alongside great colleagues – ex pharma executives, respected healthcare marketeers and social health practitioners – we share a common goal: to bridge the gap between pharma and patients and bring them as close together as possible to encourage common understanding and shared objectives. Initially we developed the ‘BREATHE’ principles to enable pharma to look at the life of a patient through the patient’s eyes (Fig 1). This evolved into the Halogen Audit – a seven domain audit to establish PE infrastructures across an organisation from early R&D through to long-term services. We’ve been delighted to work with many progressive and determined clients who trust us to turn their intentions for patient engagement into reality.

At times, we’ve had to battle with those clients to ensure that ‘patient centricity’ truly gets the attention and budget it deserves and needs within their organisation. The opportunity to become complacent and to tick-box items such as ‘a patient journey’ or ‘a patient advisory board’ as being enough to satiate a sense of ‘good patient engagement’ needs to be guarded against. For one, it is nowhere near ‘enough’ to a patient being courted by Google, Amazon and the consumer lifestyle companies who are enthralling them with data and digital solutions to only be ‘used’ by pharma when it seems to suit pharma.

Furthermore, minimising a patient’s life to being a ‘journey’ bores patients and borders on the offensive. There is no pleasant destination in the everyday chore of living with a chronic condition. This type of language and attitude is increasingly faecetious to patients. There is a lot more to be done to keep industry alert to the growing expectations of patients to be ‘treated’ with, and to, full lifestyle support programmes that they can pick and personalise.

Patients want ‘Citizen Science’ camaraderie with pharma; specifically they want multi-pharma collaborations through research and lifestyle platforms and pharma needs to upskill their data architecture and investment in collaborative platforms accordingly.

Inertia undermines intention

Irritatingly, the excuses for inertia in patient engagement have started to creep back into our practices. Industry and PO partnerships remain delicate and where some areas of engagement strive forward; others struggle to take the right steps. To understand this hesitancy, we went through case-studies and dissected the interviews from more than 40 pharmaceutical/biotech companies and POs/Patient Opinion Leaders who have participated in the Halogen audits. We also launched a social media campaign; “Lingo Bingo” inviting all experts to help us to identify pockets of inertia (Figure 2).

From this project, we are starting to see that the most frequent excuses for inertia in patient engagement can be segmented as follows:

1. Compliance concerns regarding promotion versus discussion of product data

“I’m not allowed to talk to patients”

“We can’t promote our products to patients”

“It’s too risky”

2. Ineffective reimbursement systems

“We can’t pay patients to come to our meetings”

“We don’t have a protocol for this”

“I don’t have any budget”

3. Reluctance to perceive patients as experts

“It’s more important that we understand the disease”

“We can’t invest in patient engagement until we get phase 2 data”

“We’ve done patient journey mapping”

The corollary of this is how patients misinterpret or don’t understand the internal pressures that pharma executives face during drug research and development. The main criticisms iterated during the ‘Lingo Bingo’ campaign included:

●      “My condition affects me every day; not just when your latest data comes out”
●      “It’s always the same people invited to the meetings with pharma”
●      “Pharma say ‘talk to us’ but it takes too long to get answers”
●      “Keep me in the loop; don’t make me run in your process circles.”

The most frequent complaint was; “So you can pay a ‘doctor expert’ for their time, but you can’t pay me to tell you about my experience?”.

Ruthless relationships ahead

Trite as it is to use the new decade to push the message of a clearer ‘2020 Vision’ about patient engagement; as a sector we do need clarity about what’s next. That necessitates identification of the inertia and calling time on the excuses for poor or stagnant patient engagement as the initial ‘LingoBingo’ exercise has done. Pharma companies have moved towards perceiving – and paying – patients as subject experts in their own right and to removing the red-tape and procedural obstacles around product information and promotion. Recognising that patient experts are the collective conscience of the pharmaceutical industry should be the impetus to create more mature, collaborative partnerships.

Hyperfocus is a deterrent to innovation and pharma needs to keep looking at the big picture to avoid becoming entangled in compliance minutiae; patients will use social channels and work with Google, Amazon, Facebook and Apple as the ‘GAFA generation’ and if pharma fails to collaborate by not streamlining patient engagement processes, then their reputational ‘we know the diseases’ advantage will become bleating into an echo chamber as increasingly super-connected and customer focused groups ‘know the people’.

Patients ‘love’ digital workflows and connected devices to create frictionless interactions that look at a clinical trial from a patient-informed perspective. This co-creation in the clinical trial setting will move the needle on patient engagement; creating new imperatives for recruitment where virtual trials can save time, money and still be of necessary quality. Clinical agility is the key to accelerating innovation for patients and a ‘start-up- entrepreneurial mentality will need to be developed which will be an epiphany for how to re-purpose patient engagement in the clinical trial process. This Ux design approach in drug development will be about inviting patients to be a guest in an existing product trial or create their own. It is scalable, adaptable and meaningful to patients.

Finally, pharma must adjust mindsets ready for “Generation R’ – the rise of the young and the ruthless. ‘Young Persons Advisory Group’ (YPAG) involve patients, parents and caregivers in clinical trial design as partners are on the increase. Spokespeople from ‘LiverpoolGenerationR’ recently dominated a pharma patient engagement summit with their confidence that ”as a young persons’ group we are ruthless – there is nothing that we won’t say and we will question it”. It is clear that there will be no more excuses for avoiding co-creation; this is evident with confirmation from the FDA who have stated that that patient engagement is about to stop being optional. As such, we have to ensure systemic patient input in the entire product lifecycle.

When it comes to patient engagement for the new decade, companies must take the robust position of “this is the right thing to do and POs want us to do it”. Overall, there is no time and no space for inertia in patient engagement. It is now big business for big pharma – the actual professional business of patient centricity.

About the Author

Emma Sutcliffe has been a medical writer and leader in patient engagement since 1995. Emma is head of patient engagement at NexGen Healthcare Communications and a lecturer in patient engagement and social and public health at the University of Cambridge.


Don’t miss your complimentary subscription to Deep Dive and our newsletter

Sign up



Your name

Your e-mail

Name receiver

E-mail address receiver

Your message