30-31 - The ever-increasing importance of the patient’s voice

There is an overused term that marketers and business leaders in many business-to-consumer (B2C) brands are fond of using these days and that is consumer-centric. It’s clichéd and overdone but it does come from a good place. Indeed, it comes from a place that the pharmaceutical industry needs to pay more attention to.

For historically, in the pharmaceutical sector, the consumer’s perspective – i.e., the patient – has not been considered until the last minute. Consumer-centricity is all about putting the end user at the heart of all business activities, for their perspective to be central to all operations. But in pharma we invariably see the scientist, the doctor, the pharmacist, the representative – all placed higher in the order of importance than the patient.

However, we are currently witnessing a significant shift in healthcare – the rise of the empowered patient. No longer a passive recipient, patients are now active consumers. With today’s digital communications and access to information, patients are the experts of their own condition, and this demands that they are involved earlier and in more depth in the drug development process.

From the very start of development, companies must give patients a ‘seat at the table’ – so there is no more guessing, assumptions or estimations when trying to understand patients’ needs. For decades, those providing healthcare have focused almost solely on the physiology of a disease and the required treatments, with little insight into the impact interventions may have on people’s day-to-day quality of life, or indeed what it really feels like to live with debilitating conditions.

We need the patient voice to be heard, to gain the insights that will help direct drug development to reach the true needs of the patients – to help their journey and experience, and, hopefully, their outcomes. This could have important implications for concordance, healthcare professionals’ (HCP) resources and waste – relieving care and cost burdens.

The days of patients being in the dark about their medical conditions – relying solely on their doctor – are long gone. Accurate, up to date information is accessible to everyone and this has significantly changed the relationship between the patient and the HCP. And these more informed patients do not live in isolation. They are sharing ¬– across online forums, patient advocacy groups and social media – such that there is a collective power growing.

There are numerous examples, particularly in rare diseases, that illustrate the power of recognising, harnessing and responding to patient needs. For example, in the case of cardiomyopathy – which is notoriously difficult to diagnose – exercises such as social listening and genetic explorations to analyse certain population groups have helped clinicians identify potential risk candidates. This group of cardiomyopathy patients is driving change and switching the patient journey on its head, by helping to identify at-risk patients much earlier, rather than waiting and diagnosing patients after they show symptoms.

Pharma companies are often now running their own closed patient groups. This not only leads to more sophisticated communications, but better treatment adherence and medicine compliance in the long run.

There are even cases of groups of patients organising themselves and gathering extensive data which they can then sell onto pharma for the early stages of R&D. This means patients are no longer a subject of research, but active players. They are responding to the need for accurate data for medical advancement.

Patient organisations have access – and an understanding – that pharmaceutical companies will never be able to achieve because of the strict regulations that make it exceedingly difficult for pharma to communicate with patients. These regulations exist for a very good reason – to protect patients from the misuse of information and promotion.

So where these organisations can be particularly effective, is as a bridge between pharma and patients. These are forums where patients can share their experiences, and with the weight of an organisation behind them, feel that their voices are being heard. They can work directly with pharmaceutical companies to ensure the data and insights are used to address what is most important to patients and help to ensure they are instigating experience-led drug development.

And, perhaps most importantly, pharma companies can work with organisations to help improve all stages of the development pathway – from initial research and development to clinical trials. Recruiting for clinical trials is a constant challenge for many companies – as is retention – and here patient organisations can give valuable insights into how to make participating in trials more appealing for busy patients.

Patient associations can help highlight the barriers – for example by explaining that things like complex technical and legal jargon found on clinical trial documentation, can be off-putting. This may seem minor, but it could be a fundamental factor when someone is deciding whether or not to get involved.

This is a communication challenge that pharma needs to get better at. While it is critical to abide by all the relevant regulations, it is equally important to support patients and to ensure it is easy for them to read, digest and understand what they are getting involved in. Accessible language is a vital part of tailoring trials to suit and empower patients. Indeed, there is a role for pharma in providing tools that help HCPs use the right language to communicate with their patient population more broadly.

Patients are often the best-placed to highlight the mundane barriers to taking part in clinical trials – such as transport, work commitments, family or pet responsibilities and overall time commitment. Overcoming these logistical issues are as important as the pharmacological aspects of the trials when it comes to participation.

Innovative technologies, such as fitness trackers and wearable UV sensors, are helping patients access personal health information, monitor themselves and so become champions of their own health and prevention. This is all adding fuel to their demands for their voices to be heard.

Pharma manufacturers need to be integrating this technology and matching outcomes to patients’ needs, with meaningful and tangible improvements. The industry can improve uptake and development, and work with tech to enable patients to improve their self-monitoring and prevention efforts.

And what starts with the healthcare apps and fitness tech must extend to data analysis – so the information is best used and acted upon by identifying insights that can impact outcomes for huge cohorts of patients.

This also necessitates that HCPs can understand, analyse and articulate what the data tells them back to their patients. If we are to get to a place where GPs are encouraging more at-home monitoring through wearable technology – something many corners of the profession want to see – then with that uptake must come the right support and data insight to help manage conditions, interpret the data and help with concordance.

In addition, social media or real-world data can be gathered from patients to better understand what is important to them in their daily lives. As with any real-world data, social media data use comes with its own internal tensions, pressures and legislation – all adding complexities. But the opportunities remain for pharma companies to explore.

The dynamics of this industry are complex, and this can be a barrier to ensuring the patient’s perspective is central. It involves multiple stakeholders with often conflicting agendas and priorities. Just consider the conflicting interests of three key stakeholders: while the doctors choose the medicine, they do not pay for it; patients take the medicine but they neither choose it, nor pay for it; and in Europe the government pays for the medicine but does not take it or choose it.

So, finding common ground is vital so that everyone’s best interests – clinical, fiscal and political – are driven by patient insights.

The sharing of neutral information, education and experiences, across a range of platforms, will allow companies to gain these insights and achieve a stronger understanding of the impact of a disease, beyond physiology. The industry must be brave and embrace collaboration at scale, to fully explore the potential of patient insights with reasonable freedom; only then can pharma fulfil its responsibility to develop, work and think in cohesion.