The rise of patient 2.0
Janssen’s Emily Bone talks about the evolution of modern patient engagement and why it’s the driving force of a brave new era
“Patient engagement” as a concept has evolved considerably since I joined the industry over two decades ago. As the end users of our products, patients have always been at the heart of this industry, but back then they did not have the same “key stakeholder” status as they do today. Innovation driven by patient insight was the exception rather than the rule.
Today, we are more inclined to develop products and services for patients, with patients – recognizing that when it comes to understanding the physical and emotional impact of disease, or therapeutic needs, it is the patients, their caregivers and often their families who are the real experts.
Today, we recognize the benefits of patient engagement throughout the product lifecycle, from the earliest stages of drug development through patent expiration and beyond. Indeed, there is almost no part of a drug’s life cycle that does not benefit from the integration of patient perspectives.
As an industry, we are more willing to partner with patients to amplify their voice on disease-related issues and co-create innovative “beyond the pill” solutions to help them effectively manage their disease.
When I started, most people who wanted to learn more about a disease and its treatments had limited options: healthcare professionals, patient organizations (if any) or even the local library – on second thought , the potential for shame and embarrassment with this option can’t bear to think about now.
Digital communication, however, means more than just access to disease information; it also means that people living with a disease can find others like them, network, share experiences, provide emotional support and organize themselves into campaign groups to advocate for better recognition , public support or access to treatment.
That said, the free flow of information through digital channels also has obvious drawbacks. A lot of information about diseases and treatments is misleading, or just plain wrong, not to mention dangerous. A prime example of this is the misinformation surrounding COVID-19.
This challenges everyone in our industry, professional health bodies, public health organizations and the media – to do all we can to direct people to evidence-based disease information.
The phrase ‘no decision about me without me’, which emerged in the UK over a decade ago, is still relevant today. Although shared decision-making is not for everyone, patients who are able to take an active role in their disease journey can achieve better health outcomes.
A good example of this – and one in which Janssen is proud to have been a part – has been the development of a cohesive information resource to support patient and patient group feedback through assessment decision-making. health technologies (HTA).
We worked with the UK reimbursement body, NICE, to create a plain language summary of the medicine under review. This approach can be used as a best practice by other organizations when submitting evidence briefs to HTA agencies around the world.
Digital innovation has also played a role in increasing the influence of patient organizations. This creates opportunities for patients and patient organizations to reach wider audiences, thereby creating global communities. This is particularly important for people with rare diseases, as those affected are unlikely to personally know anyone else with the disease.
While pharma has long recognized the importance of patient organizations, regularly collaborating with them on a range of issues, this has not always been the case. Historically, we have tended to establish more transactional rather than ongoing relationships with these organizations, only engaging with them in specific cases when their assistance is required.
Similarly, financial support for these organizations was previously only provided as long as a company was actively involved in the area of the disease concerned. Recognizing that this is not the way to build trusting relationships, a forward-looking company should seek ongoing engagement with patient organizations, overseen by a single point of contact.
Patient involvement in clinical trials is essential. Regulatory agencies, such as the European Medicines Agency (EMA) and the Food and Drug Administration (FDA), actively encourage research-based pharmaceutical companies to involve patients in trial design. They place particular emphasis on adopting a structured and systematic approach to this engagement, so that replicable expertise will develop over time.
Taking the time to research patient or caregiver perspectives for creating a more user-friendly clinical trial can be beneficial in the long run. It can speed up recruitment, improve patient retention, deliver faster results, and in some cases even save money by eliminating unnecessary steps or cumbersome procedures.
Patients can also provide valuable information in terms of identifying the most appropriate test parameters; for example, in chronic disease surveys, some symptoms have a much greater impact on quality of life than others (and they may not be the most obvious). The ability to demonstrate improvement in the areas that matter most to patients is not only a moral and ethical imperative, but also a pragmatic business practice.
Feedback collected from patients through Janssen’s Patient Voice in Clinical Trial program has had a significant impact on trial design and implementation. Since its launch in 2018, operational changes have been made to 100% of the trials in the program and protocol changes have been made to more than half of the trials. It is important to note that this information is made available to other research teams so that the lessons can be applied to other studies, as appropriate.
Just as digital communication has brought transparency to healthcare and treatment information, we must also remember that transparency plays a role in our engagement work. Can we clearly and meaningfully demonstrate how patient engagement has influenced or changed policy or development decisions?
Additionally, are we monitoring the extent and effectiveness of patient engagement, and are we able to show the value it brings? Additionally, are we continually reviewing how these new methods can complement and enhance our work with patients?
The common underlying principles of patient engagement are increasingly shared across public and private organizations, and the further development of standards and systems for how industry should engage with patients will help bring more coherence to objectives and approaches.
For me, creating an environment that enables mutually beneficial partnerships between these communities is something we should all actively strive to achieve. I believe this is the most effective way to deliver medicines and services that patients and healthcare systems truly value.
Emily Bone is the Patient Engagement Excellence Manager for Europe, Middle East and Africa at Janssen.
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