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Over the last few years, the role of the patient in clinical research has undergone a huge transformation. The expectation that patients will be involved in the design, running and evaluation of the research process has shifted from a lofty ambition to a grounded expectation. More and more pharma companies are boasting “patient centered” credentials at the forefront of their drug development.
Prior to this, the business model of pharma remained unchanged and unchallenged for decades — it was one based off profit in discovery and commercialization of the drug process. If drug development wasn’t profitable then it often wasn’t funded, even leading to rare diseases being dubbed “orphan diseases” as opposed to looking for true solutions. Now, concern for patients has begun to rival profitability as a consideration.
Pharma companies are now under increasing pressure, and increasingly willing, to offer a patient-centric approach. But with this increasing demand comes confusion about what patient-centered research actually is.
Back in 2018, the Aurora Projects’ landmark report into patient centricity1 identified that only 22% of companies “know exactly what and how to teach [patient centricity] to our people.” Promisingly, however, over half said they were “actively looking” to learn more.
On top of this confusion, patient centricity methods have been forced to adapt throughout the pandemic. As pharmaceutical companies scrambled to respond to new ways of working to keep their projects going, patient centricity fell out of focus.
The benefits of patient centricity have become clear over the last few years, but if it’s to become more than just a trend, pharma companies must first understand what is and then bring together a plan of action.
Patient-centric research has its roots in the patient advocacy movement where individual patients would fight for better protections, considerations and treatment by drug companies. It is best described as putting the patient at the heart of every part of the clinical research process. This includes co-design of the trial, patient selection, choosing the location, influence over the monitoring and evaluation process, drug pricing and above all, regular, impactful consultation and feedback throughout.
The ethos is that the people pharma companies are treating know best about the physical practicalities of their treatment.
This approach has numerous benefits:
Patient advisory boards can help avoid potential oversights, such as people with chronic fatigue illnesses being asked to repeatedly travel to a remote site.
Full patient consultation around the trial can help boost engagement, retention and recruitment rates, resulting in a higher quality data set.
Co-design of the trial process, including patient selection and consultation with advocacy groups, can lead to increased diversity in previously under-represented groups.
This requires a shift in mindset as well as practical techniques, but means clinical research is something companies do with patients, not to them.
Traditionally, board room conversations in pharma would discuss market share, competition activity, and the profitability of new ventures. These things are all important to the success of a business, but patient-centric healthcare means they should be weighted alongside the number of patients helped, not so highly above it.
Companies can adopt some quick fixes to begin to shift this mindset. Examples included in the Aurora Project’s patient centricity report include having a board ‘seat’ reserved for patients at meetings, or measuring patient trust as an important KPI.
But for more meaningful progress, the company attitude needs to change as a whole.This can be through new team leads dedicated to patient-centric healthcare, or asking questions on this in the hiring process to find out which potential employees share your vision as a company.
Ultimately, if patient centricity is truly an aspiration, and not just a badge, companies should focus on what they really want to achieve from the process, how they can do it, and how they can continue to improve it going forward.
As the patient engagement landscape shifted throughout 2020, so did the sophistication of the measures used to facilitate it. Patients were unable to travel to in-person sites which hindered monitoring, and trials in general experienced severe disruption. Fortunately, virtual engagement technology can ease this process.
Virtual engagement companies in the medical device space are specialized in maintaining engagement in a remote environment. Tech that was originally used to plan international conferences and research has been adopted to ease remote clinical trials, with patients back at their center.
Through this, pharma companies can ensure that patients are able to take part in the trials on a basis that suits them, maximizing engagement. They can also aggregate data across sites, benefiting the efficiency of the trial, and they’re able to perform a wider consultation with patients due to the ease of communication.
Patient centricity has become a buzzword over the last few years in pharma. But it’s important that when it’s done, it’s done thoroughly. This means at each stage of the trial process, from trial design and patient selection, to drug pricing and evaluation, patients are meaningfully involved. By adopting a thorough, in-depth approach, pharma companies can harness the full range of benefits involved in patient-centric research.
Patient-centric research has the potential to change pharma for the better. We’ve already seen the benefits in terms of engagement and enrollment, as well as the opportunity to bring drugs to market sooner. To reap these rewards going forward, it’s important that companies begin to weave this approach into the fabric of what they do, and why they do it. With this as a driving force, pharma companies can provide the best support to the patient groups they serve.
Sam Murphy is Principal Manager at RBW Consulting.