Sandra Sánchez-Oldenhage
President & Founding Partner
Expert Contributor

Patient-Centricity and its Role in Transforming Patients’ Lives

By Sandra Sánchez | Fri, 09/18/2020 - 09:41

Patient-centricity – putting the patient at the heart of the operation, while considering how decisions about business will affect the patient - is a trend that is slowly but surely transforming how medicines are conceived, trialed, marketed, delivered, and reimbursed; a shift from disease/physician-centered approaches to health care. Designing a service or solution around the patient, thus embracing their voice throughout business processes, can be seen in a number of ways, such as seeking patient input on whether a clinical trial protocol makes it easy or hard to participate, or involving patients in the design of medicine packaging. The key stakeholders in all this, the patients, are probably unique in not thinking in terms of patient-centricity. Nevertheless, their voice, their involvement in treatment plans, their experience of those plans and, most importantly, their outcomes are gaining significant traction as everyone tries to work out what it means to put the patient rather than the system first in healthcare.  Patients are moving from being recipients to active participants; thus, the industry needs to align strategies to pull them into the focus of future business models.

The roots of this transformation have to do with the fact that patient outcomes can now be measured more effectively and are therefore more important for reimbursement and access decisions than ever before. Furthermore, patients are taking a much more proactive role in their healthcare hence taking control, with technology serving as the key enabler to empower them with the right information, at the right time; while physicians, care givers and industry can now capture information of relevance from their patients, identify preferences, and better inform treatment decision making. With recent healthcare reforms on both sides of the Atlantic which strongly incentivize providers to put patients at the center of healthcare decision-making, patients’ active participation will fuel this new era.

Understanding the patient´s experience, what symptoms most affect their quality of life and how they measure improvement, can enhance disease management at critical points in the disease course. The future of patient centricity lies in coordinated efforts and alignment of multiple health care stakeholders, which can only be achieved through collaborations and consortia, with the industry playing a key role. While there has been a shift towards more focus on the patient, the pharmaceutical industry still has a long way to go to truly deliver on this new promise to the market and the patient. 

Now is the time to adopt patient centric strategies to focus more on patient needs and increase efficiencies. One of the most vulnerable patient groups and one in dire need of being heard, is the cancer population. Companies typically evaluate cancer therapies on their ability to shrink a tumor or extend life, using progression-free survival or overall survival as an endpoint. Yet, patients with cancer may differ in their focus and may have more concerns about their quality of life with disease symptoms and treatment-related side effects. Adopting patient centric strategies into the oncology therapeutic area, starting from clinical trials, have the potential to significantly impact patient recruitment and retention in a positive way. Therefore, bringing the patients’ voice at the beginning of the trial is paramount to success.

Rather than making assumptions about what patients need, it is critical to ask patients directly; and the earlier the better, from a cost efficiency standpoint. This means introducing best practices for connecting with cancer patients and using their input to reduce the burden on them through better protocol design, use of social media and concierge support. Connecting with patient advocacy organizations at the pre-protocol design stage can provide companies with an understanding of patients' experiences in past trials and enable incorporation of this feedback as the protocol is being written, instead of making amendments afterward when they are far costlier and more time-consuming. By incorporating these changes into an oncology trial, sponsors can decrease the burden on patients and increase participation.

Cancer is not one disease, but a constellation of diseases of immense complexity that cannot be solved by only one approach or by considering only one view; therefore, working together to understand every constituents concerns, including the patients voice is critical to improving outcomes for patients and becoming a trusted partner in changing the practice of medicine
Successful implementation of treatment in cancer care partially depends on how patients' perspectives are considered, as preferences of health care professionals and patients may differ. So, it is important to identify patient preferences and values in cancer care, through patient organizations, determine how these are captured in cancer care guidelines and how guidelines take them into account. 

Patient experience, emotional support and convenience of care have been relatively neglected fields in treatment guidelines. Bottom line - patient engagement has rarely been considered in guideline development phases. Patient organizations believe that patients should be encouraged to take an active role in their own care due to the heterogeneity of cancer patients, including their values and preferences. Even if patient-centricity is a leading paradigm in cancer policy, it is not yet standard practice to include patients at all appropriate levels of decision-making processes that are related to their health and well-being. Patient engagement should be an integral part of cancer care decision-making. This complexity must be reflected throughout clinical trials, disease treatment and policy making, avoiding a population level “one-size-fits-all” solution.

Despite progress in some countries to reduce the rate of cancer, the unmet medical need remains high as cancer is becoming more prevalent as the world’s population ages (among other factors). However, currently, worldwide, 43.8 million people have managed to live after 5 years of their cancer diagnosis. As investment, information, diagnostics, and treatments improve, our chance of surviving cancer is improving. How long patients live is as important as how they live after or during their treatment. Quality of life for cancer patients is undoubtedly, one of the guiding axes of innovation in cancer treatments, hence their voice needs to be heard and considered when developing a drug and designing a solution or a service.