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The rise of the patient voice and increased acceptance of remote engagement are sparking a culture change across the supply chain
Over the last few decades, many scientific and technological advancements have helped the healthcare landscape to flourish and change—and no more so than in the area of patient engagement.
With the advent of digital communication platforms, patients are now able to engage more closely with the work of the pharma industry, and subsequently take more active roles in their treatment decisions. This has been encouraged by the availability and proliferation of information sharing between patient communities as they actively drive their own healthcare agendas.
Businesses throughout the entire supply chain are now facing a culture shift as a result of the rise of the patient voice and the increased acceptance of remote engagement catalyzed by the COVID-19 pandemic. This is a shift away from traditional scientific endpoints as the key driver in drug development, to a more holistic approach to the patient outcomes that really matter to patients’ lives.
HIV as an example
From a clinical perspective, HIV treatment is all about CD4 T-cell counts and viral loads. Throughout treatment, healthcare providers (HCPs) will monitor a patient’s blood levels and prescribe a carefully balanced regimen of drugs that aim to prevent the virus from reproducing—this allows the patient’s CD4 count to rise and their immune system to recover. The virus can become resistant to these drugs so the HCPs must work diligently to monitor viral concentrations and keep the upper hand by prescribing new drug combinations.
This approach shows how the scientific community has traditionally looked at the efficacy of treatment, with a focus on clinical outputs. While it has undoubtedly delivered incredible results—in only a few decades, HIV has become treatable with a daily single tablet combination regimen—it doesn’t factor in more holistic considerations of the patient’s well-being and day-to-day experience.
With a shift in focus from “outputs” to “outcomes,” a value-based approach might investigate how to modify antiretroviral medicines to reduce side effects and improve how convenient it is to take medication. It may also seek improved or faster ways for a patient to achieve an undetectable viral load, which will allow them to feel more confident in everyday life.
This example only shows a selection of the issues facing patients for one specific disease—and indeed one of the key questions facing our industry now is how healthcare models can be developed universally to meet diverse, complex, and individual patient needs across all therapy areas. As a result, healthcare industries are starting to view key performance indicators differently, taking a step away from scientific outputs as a primary focus, to a more inclusive approach toward outcomes that really make a difference to patients’ lives.
The move toward value-based healthcare, where patient needs and concerns are at the heart of drug development, is increasingly recognized as a sustainable business model for the pharmaceutical industry. Patient preference data is already starting to be requested at submission or approval stages and has even been included in product labeling in some instances, such as with Genentech’s hamato-oncology product Rituxan Hycela1, where patient preference survey results are included around administration methods.
In the US, the American College of Surgeons (ACS) and Harvard Business School’s (HBS) Institute for Strategy and Competitiveness is developing a program to help hospitals and surgical practices improve surgical patient outcomes while lowering the cost of delivering care. Appropriately named THRIVE (Transforming Health care Resources to Increase Value and Efficiency), the program is piloting the measurement of the full cycle of care—including key surgical, medical, behavioural, and social elements—for three surgical conditions.2
It is clear then that the trend toward patient outcomes is gaining momentum and this has implications throughout the lifecycle of healthcare—not just at the point of primary care.
Accelerating the route to digital
While there has been a historical reluctance in the industry to accept the use of digital communications technology in some aspects of patient dialogue, mainly resulting from compliance limits, through necessity the pandemic has done a lot to address these reservations. In response to the pandemic, care providers and their partners had to build services for patients that enable them to be supported at home. Service areas such as remote patient monitoring, self-management training, and home-administration have all increased significantly, enabling patients in many cases to commence or continue treatment at home. Patient Solutions teams at Ashfield, for instance, are now running a number of remote programs and delivering virtual support to patients that was previously delivered face-to-face.
Digital platforms are enabling patients to openly communicate preferences around their own treatment and have driven patient preference information (PPI) to become an increasingly important part of the wider healthcare conversation.
Technological advancements are allowing pharma businesses to explore this area more effectively, and as the digital revolution continues to unfold, so do the ways in which technology can potentially support patient needs. Implementation and interpretation of electronic health record (EHR) systems, big data, and health analytics offer a huge potential for driving toward true value-based healthcare.
The industry is investing in this burgeoning area and working to understand the many ways it can possibly connect global healthcare systems and translate the hidden value in their data. Unlocking data could lead to more informed healthcare decisions, reduced costs, and widespread improvements in treatment.
There is a lot of buzz around this theme, as technology and healthcare experts try to unpick this incredibly diverse and complex landscape. Although data are becoming increasingly available, the processes and tools for capturing, sharing, and understanding them are still behind. A further concern is around how regulation and patient privacy can be maintained, especially in an era where GDPR is high on the agenda for anyone managing or accessing patient data.
The “people factor” is explored in another way by the International Consortium for Health Outcomes Measurement (ICHOM).
The organization collaborates with patients and HCPs to define, measure, and advocate the benefits of capturing and measuring long-term patient outcomes as a key driver for improving care. In its short film Measured Outcomes: A Future View of Value-Based Healthcare4, experts discuss the benefits of maintaining long-term relationships with patients and suggest how a system of globally unified benchmarks for outcome analysis could revolutionize the health system. By creating unified criteria, it should be possible to create a forum for the review and comparison of learnings around the world, which, in turn, would promote wider discussion, and the sharing of common goals, challenges, and best practices.
The healthcare industry is already starting to move toward a mind-set of improved patient outcomes‑however, more work still needs to be done to harness the opportunities presented by the evolving healthcare landscape, and especially at a time when a global pandemic is so rapidly changing the experiences of so many patients. Despite many advances in Western culture, the WHO states that HIV is still one of the top threats to global public health in 2019.5 This shows that collaboration, sharing of data, and best practice is needed on a wider scale to truly bring value to patients on a global scale.
Continuing to work in this direction will support an evolution toward personalized healthcare that nurtures patient communities. Technology will remain a critical driver in delivering on this vision and in being able to define and deliver tools and platforms that support a more value-based healthcare model that will ultimately provide benefit to the entire stakeholder group.
About the authors
Ben Johnson is Patient Engagement Director
Jo Fearnhead-Wymbs is Head of Patient Engagement
Both with Ashfield Healthcare Communications