In tech we trust

In tech we trust: patients, personalised medicine and the pharma trust deficit

Patients, personalised medicine and the pharma trust deficit


Regardless of whether you’re reading this in an office, at home or in the local café, look around and ask yourself how many things you can see that are personalised. Your laptop folders are structured in a way that only you can easily navigate. You unlock your phone using your fingerprint or unique PIN, pattern or password. Your social media profiles are one of a kind, and you receive advertising that is tailored to your specific preferences and interests.

This tendency towards personalisation now permeates most, if not every, aspect of our lives and has inevitably reached the healthcare industry. Words like “genetics” and “DNA” are no longer reserved for scientists, but are often present in everyday conversations. There has been a gradual change in the public perception of science as complex and hard to understand, to something more engaging and exciting. More personally important to them.

An Opportunity Arises

The progress we’ve made in science and technology over the last decade has been stunning. The Human Genome Project took 13 years and millions of dollars to complete. Today, companies like 23andMe offer a direct-to-consumer personal genome testing service for $200. The pace of change is incredible, but while the revolutionary vision of personalised medicine may not be fully realised yet, in many more subtle and user-friendly ways, the personalisation of medicine is already with us and changing the lives of ordinary people.

For now, many of these personalised innovations remain technology-focused; disease management and pregnancy monitoring apps are just two examples of how technology is being used to address individuals on their own terms. However, among all the excitement of these innovations, what does it all mean for the pharmaceutical sector? How will pharma – which is already playing catch-up with digital technology – deal with marketing communications when faced with the triple challenges of mass personalisation of consumer engagement, an influx of new health technologies and the data-driven development of targeted therapies for smaller cohorts of patients?

In tech we trust: patients, personalised medicine and the pharma trust deficit

Disrupt or be disrupted

With personalised medicine and the personalisation of consumer engagement here to stay, the pharma industry must change and adapt to these new approaches. Recognising that mass personalisation is their competitive edge, pharma and biotech companies must evolve how they reach and educate their healthcare audience and patients.

Although most pharmaceutical firms have recognised the potential of specialist personalised therapies, some continue to use a marketing and sales model that was designed to promote primary-care products for mass-market consumption. The global move towards personalisation cannot be ignored, but pharmaceutical companies would have to commit enormous efforts to change the way they work and overcome the challenges they face thereby. Perhaps the most significant such challenge pertains to trust, because the foundation of personalised content and communications is people’s consent to share their data.

Data, trust and reputation

Currently the industry follows a linear approach. Companies do research, then develop the drug and if it passes clinical trials, they manufacture, market and sell it. It is at this point the medicine reaches wider patient groups and becomes used in treatments and care. However, with personalised medicine in the early stages of becoming a game changer, this process will become much more intertwined with patient use at an earlier stage. The patient – and their data – will become an active part of the drug development process, they will be at the very centre of the industry.

And the data is key. The idea behind personalised medicine is simple and powerful: delivering the right treatment to the right patient at the right time. But collecting and analysing collecting both phenotypic and genotypic information from patients is a more complex issue. With the failure of several high profile patient record system programmes – and the corresponding public outcry and loss of trust – there is a need to build and sustain public trust.


The irony is that while concerns over healthcare system’s management of patient data continue, millions of consumers all over the world willingly give their data to a myriad of health management devices and apps every day. Wearable technologies are now commonplace and we already have access to all the tools we need to manage our health. So how can the whole healthcare system – from patients through to healthcare systems, health tech providers and pharma companies – work together to use these technologies to their best advantage? It all comes down to generating trust in those collecting and analysing data in order to support the discovery and development of new therapies.

At a time when public trust in pharma has hit a new low, how can we expect people to comfortably share their data in order to allow the industry to take advantage of data-driven technologies in order to advance personalised medicine? In 2018, Edelman’s annual Trust Barometer survey showed trust in pharma and biotech companies plummeting in 17 out of 23 marketings, including the UK, Germany, France and US. Similarly, a 2018 Ipsos/MORI survey showed that, of the more than 18,000 people across 23 countries surveyed, only 48% believed that pharmaceutical companies will treat them fairly.

So, if patient trust and the availability of digital data is key to personalised medicine, how can the pharma industry, for its part, rebuild trust and turn the conversation from price to value, and bring about a profound public understanding of the value that medicines bring to patients and the healthcare system?

Rebuilding trust

We inevitably relate to real stories, told by real people. Developing a consistent brand narrative that humanises the pharmaceutical industry could therefore be a successful approach in regaining public trust in the sector. Bring the success stories into the spotlight. Talk about how a new medicine or therapy that addresses an unmet need has improved real patient’s lives. Get a scientist working in pharma R&D to talk about what a day looks like for them, or demonstrate what goes into the process of drug development and where patient data comes into the picture.

The #WeWontRest campaign created by Leith for the European Federation of Pharmaceutical Industries and Associations (EFPIA) showcases what such an approach could achieve. It was the first pan-European campaign of the pharma industry, telling the stories of the people developing new medicines, as well as of those benefiting from them. It united the industry behind a positive message, gaining personal pledges from over 350 pharma professionals, and its impact continues to grow.

Campaigns such as this are making the mission of rebuilding public trust achievable. Helping the public to understand the industry at a human level could make them more willing to share their data and be part of the change, enabling pharma to unlock the doors to realising the potential of personalised medicine for improving public health.