The growing importance of the patient’s voice

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We are currently witnessing a significant change in healthcare – the rise of the empowered patient

There is an overused term that marketers and business leaders of many B2C brands like to use these days that is consumer-centric. It’s cliché and overkill but it comes from a good place. Indeed, it comes from a place to which the pharmaceutical industry needs to pay more attention.

Because historically, in the pharmaceutical sector, the point of view of the consumer – that is to say the patient – was only taken into account at the last minute. Customer centricity is about putting the end user at the heart of all business activities, so that their perspective is at the center of all operations. But in pharma we invariably see the scientist, the doctor, the pharmacist, the representative – all ranked higher in 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, the patient is now an active consumer. With today’s digital communications and access to information, patients are the experts in their own condition, and this demands that they be involved earlier and deeper in the drug development process.

From the very beginning of development, companies need to give patients a “seat at the table” – so there are no more guesswork, assumptions or guesswork when trying to understand patient needs. For decades, healthcare providers have focused almost exclusively on the physiology of a disease and the treatments required, with little information on the impact interventions can have on people’s quality of daily life. or even on what it really feels like to live. with debilitating conditions.

We need patients’ voices to be heard, to get the information that will help guide drug development to meet the real needs of patients – to help their journey and experience, and hopefully their outcomes. This could have important implications for healthcare worker concordance, resources and waste (HCP) – alleviating the burden of care and costs.

The Changing Relationship between Patients and Healthcare Professionals

The days when patients were unaware of their condition – relying only on their doctor – are long gone. Accurate and up-to-date information is accessible to all and this has considerably changed the relationship between the patient and the healthcare professional. And these better informed patients do not live in isolation. They share ¬– on online forums, patient advocacy groups and social media – so that collective power grows.

There are many examples, especially in rare diseases, that illustrate the power to recognize, harness and meet the needs of patients. For example, in the case of cardiomyopathy – which is notoriously difficult to diagnose – exercises such as social listening and genetic scans to analyze certain population groups have helped clinicians identify potential risk candidates. This group of cardiomyopathy patients is driving change and disrupting the patient journey, helping to identify patients at risk much sooner, rather than waiting and diagnosing patients after they show symptoms.

Pharmaceutical companies now often manage their own closed patient groups. This not only leads to more sophisticated communications, but better treatment adherence and long-term drug compliance.

There are even cases of patient groups getting organized and collecting extensive data that they can then sell to pharma for the early stages of R&D. This means that patients are no longer a subject of research, but active players. They meet the need for precise data for medical progress.


“With today’s digital communications and access to information, patients are the experts in their own condition”


The rise of the patient association

Patient organizations have access – and understanding – that pharmaceutical companies can never achieve due to strict regulations that make communication between pharmaceutical companies and patients extremely difficult. These regulations exist for a very good reason: to protect patients from the misuse of information and promotion.

So where these organizations 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 organization behind them, feel their voices are heard. They can work directly with pharmaceutical companies to ensure that data and information is used to address what is most important to patients and help them ensure that they initiate drug-based development. experience.

And, perhaps most importantly, pharmaceutical companies can work with organizations to help improve all stages of the development path – from initial research and development to clinical trials. Recruitment for clinical trials is a constant challenge for many companies – as is retention – and here patient organizations can provide valuable insight on how to make trial participation more appealing to busy patients.

Patient associations can help highlight barriers, for example by explaining that things like complex technical and legal jargon found in clinical trial documentation can be off-putting. It may seem minor, but it can be a fundamental factor when a person decides whether or not to get involved.

It is a communication challenge that pharma must take up. While it is essential to comply with all relevant regulations, it is equally important to support patients and ensure that it is easy for them to read, digest and understand what they are getting involved in. Accessible language is an essential part of tailoring trials to adapt and empower patients. Indeed, the pharmaceutical industry has a role to play by providing tools that help healthcare professionals use the right language to communicate more broadly with their patient population.

Patients are often in the best position to point out trivial barriers to participating in clinical trials – such as transportation, work commitments, family or animal responsibilities, and overall time commitment. Overcoming these logistical problems is as important as the pharmacological aspects of the trials with regard to participation.Technical support

Innovative technologies, such as fitness trackers and wearable UV sensors, help patients access personal health information, monitor themselves and thus become champions of their own health and prevention. It all adds fuel to their demands for their voices to be heard.

Pharmaceutical manufacturers must integrate this technology and match the results to the needs of patients, with significant and tangible improvements. Industry can improve adoption and development, and work with technology to enable patients to improve their self-monitoring and prevention efforts.

And what starts with healthcare applications and fitness technology needs to expand into data analytics – so that information is better used and leveraged by identifying information that can impact outcomes. for huge cohorts of patients.

It also requires healthcare professionals to be able to understand, analyze and articulate what the data is telling them to their patients. If we are to come to a place where GPs are pushing more home monitoring through wearable technology – something that many areas of the profession want to see – then with this adoption must come the right support and knowledge of the data. to help manage conditions, interpret data, and help with concordance.

Additionally, social media or real-world data can be collected from patients to better understand what is important to them in their daily lives. As with all real-world data, the use of social media data comes with its own internal tensions, pressures, and laws, all of which add complexity. But there are still opportunities for pharmaceutical companies to explore.Complex interests

The dynamics of this industry are complex, and this can be a barrier to ensuring that the patient’s perspective is central. It involves multiple stakeholders with often conflicting agendas and priorities. One need only consider the conflicting interests of three key stakeholders: while physicians choose the drug, they don’t pay for it; patients take the drug but they don’t choose it and don’t pay for it; and in Europe the government pays for the drug but does not take it and choose it.

It is therefore essential to find common ground so that the best interests of everyone – clinical, fiscal and political – are guided by the knowledge of patients.

Sharing information, education and neutral experiences, across a range of platforms, will allow companies to acquire this information and better understand the impact of a disease, beyond physiology. The industry must be courageous and embrace large-scale collaboration, to fully explore the potential of patient knowledge with reasonable freedom; Only then will pharma be able to fulfill its responsibility to develop, to work and to think together.



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