An all-encompassing digital era has opened unique opportunities for industry to engage with patients meaningfully, while also creating a modernised healthcare landscape which yields trust and cooperation. For the most impactful communicators the future is now...

Patients’ role in their own health has evolved more in the past decade than in the previous six combined. Consequently, an all-encompassing digital era has opened unique opportunities for industry to engage with patients meaningfully, while also creating a modernised healthcare landscape which yields trust and cooperation. For the most impactful communicators the future is now...

As the full force of the digital age has emerged so, inevitably, has the tech-savvy, ultra-modern healthcare consumer – ‘patient 2.0’. For much of the NHS’ 71-year history, patients were happy to hand their health over to science, doctors and medicine, leaving curiosity in the waiting room and fingers crossed. Details about their own conditions were, thus, negligible, while knowledge about medications was virtually non-existent.

This situation, in addition to labyrinthine regulations, meant that many channels of patient communication had been closed to industry – that is, until the last few years. The post-war age of innocence has now been laid to waste by a marching ‘broadband’ of passionate patients, all with their fingers on the pulse (literally and figuratively).

While the opportunity for pharma to break bread is exciting, it has not been a simple matter of barging in and ‘speed dating’ through patients with a few hastily scribbled chat-up lines, as Kelly Franchetti, VP, global head Patient Insights and Engagement, at ICON, explains: “It takes a multidisciplinary team of R&D experts, marketers, healthcare providers, bench scientists and behavioural experts to fully understand how best to communicate with patients in a way that truly resonates.”

Great expectations

The rebooted patient of 2019 now has access to forums, wearables, medtech, alternative medicines, medical data and a never-ending, constantly updating stream of information, comment and analysis about life sciences companies and their associated products. When it comes to the relationship between an industry and its consumers, there has not been a greater metamorphosis (beta-morphosis, if you will) than the one unfolding between pharma and patients.

For industry, it represents a golden chance to get closer to the promised land of real patient experience. Rather than seeing patients as concepts or numbers, the modern terrain has enabled the best patient-centric communicators to view patients in high definition.

The genesis of trust in the new ecosystem between patient 2.0 and industry lies in credible communication, and beyond the lip service and weightless jargon of years gone by. Nicola Walsby, managing director of UK PR at Syneos Health Communications, appreciates that industry must, above all else, be authentic. “There has been a clear shift in recent years, with companies taking a more proactive stance on patient-centricity and what this means from a business and communications approach,” she says. “The most important factor is to genuinely understand the patient perspective. It’s about how we can deliver value to them – supporting them in their health journey, rather than simply pushing out commercial priorities and messages.”

There is also a need to appreciate the inherent freedoms of the new world, as Dr Caroline Forkin, ICON’s senior director of Medical Affairs at FIRECREST, has discovered: “Patients now have the means to express their opinions publicly at any time, without needing to be formally asked, and can also exercise their right to access information without being dependent on their healthcare system to give it to them.”

Kelly is adamant that the pharmaceutical companies who have fully adopted the patient-centric mindset have gone beyond buzzwords, to recognise that interactions are more successful when they place patients at centre stage – especially when products are making their critical journey to market. She explains: “By taking the time to understand a patient’s lived experience with their disease, how they evaluate treatment decisions and who they turn to as a trusted source, pharma companies can develop clinical trials that meet the needs of patients and their families.”

Talking about an evolution

The last decade has been industry/patient’s ‘pangea’, except rather than vast land masses separating, they are moving ever closer. The shaking up of the old order has been a historical moment for pharma, but one that requires tenacious and skilful navigating of the new landscape.

Caroline says: “Patient-centric communications continue to evolve at pace, prompted largely by the desire from patients to be more involved, and the ubiquity of digital communications and social media as a means of communication and sourcing information.”

Nicola adds: “Patient insights can help pharma accelerate their portfolio of meaningful innovations by designing solutions that deliver an unmet need. For example, UCB are working closely with patients to reduce the unpredictability associated with epilepsy. This work has led to a number of partnerships with tech companies to create wearable tech and monitoring systems.”

Kelly has also observed that as pharma makes communication advancements patients have, in turn, become wiser and bolder in their assertions. “Patients are savvier in the critical evaluation of communications directed at them,” she says. “Even when a patient has a trusted relationship with an HCP, they won’t hesitate to carry out due diligence on their own treatment options. This provides an ‘aperture moment’ in which strategically adept pharma companies can reach patients and provide engaging, patient-driven content.”

Meaning of life

As pharma begins to unlock the potential of the pharma-patient relationship and digital communications dominate, the emphasis has shifted towards an understanding of the whole person rather than just his or her condition. “The digital era has meant we are able to instantaneously understand patient sentiment and perspective,” reflects Nicola. “A greater level of insight means there is more opportunity to communicate with patients in a highly tailored, targeted and responsive way; more akin to consumer marketing approaches and methodologies.”

The transformation in pharma/patient dynamics has been epitomised by the incredible speed in which exchanges now unfold. “The digital era has allowed pharma companies easier and more direct avenues to communicate with patients - way beyond a 60 second TV ad,” explains Kelly. “Whether through social media posts or digital disease awareness campaigns, pharma companies are working to increase their digital footprint with patients. The key lies in understanding the needs, fears, attitudes and cultural nuances of every given patient population.”

ICON used these parameters when considering how best to provide tailored information to patients in relation to consent information. “Rather than assuming we knew what patients needed to know, we asked them directly,” says Caroline. “Patients selected the key pieces of information that influenced their decision on whether to take part, and asked for more details if they needed them. We responded by developing a multimedia platform for delivering tailored information, allowing patients to interact and highlighting particular aspects for discussion.”

Such approaches evidently place patients in the driving seat, giving them ownership of their informed consent discussion and steering it towards areas of relevance, rather than the dark alleys of regulation or legal caretakers of the clinical research agenda.

Origin of a new species

Charles Darwin clearly would have admired the ascent of the modern patient. From humble bystander to a partner in the development of their own treatments – it represents an evolutionary narrative which, in its greatest hours, defies the laws of nature, while also adding a profound dimension to the ‘survival of the fittest’ construct. For ICON and Syneos Health the dawn of the new era has already witnessed some important milestones and tantalising indications of what happens when patient communications hit the sweet spot.

In 2016 a study to evaluate the effectiveness of a cystic fibrosis educational programme began recruiting patients to complete a survey. The original recruitment occurred through physicians, but after a year only four people had completed it. ICON was duly engaged to provide a new patient recruitment strategy in 2017. “We conducted online research into the impact of the disease and the treatment, COLOBREATHE, on the lives of patients and their families, while also gauging social media activity and influences,” explains Kelly. “After recommendations were made to improve communications with patients, survey completion more than quadrupled.”

Syneos Health’s work with AbbVie has involved raising global awareness of Hidradenitis Suppurativa – a painful condition that experiences low diagnosis rates and extraordinary delays in care. “Our programme has driven increased diagnosis and positive patient outcomes in 43 countries worldwide,” says Nicola. “We took significant time to ensure we had the right patient outcomes at the outset, and designed nothing until we knew it was genuinely going to benefit patients. The campaign has won a number of awards over the last year and is held up at AbbVie as an example of best practice in patient support.”

As we reflect on the plethora of high-tech wizardry and its astonishing ability to promote unions, it is perhaps reassuring to realise that – at the heart of patient-centric comms - is patient individuality and the unique fingerprint of their health that is forming the bedrock of compelling, captivating and cohesive communications.

Indeed, as the new movement gains traction, pharma is taking patients with them on a crusade against disease - not as helpful assistants, but as equals. Meanwhile, patients are realising that the people of pharma are very much like themselves – human after all.