Design thinking

Building the Capacity for Self-Care

Ninety-nine percent of healthcare happens outside the hospital, clinic or pharmacy. It takes place in the homes of the millions of people around the world who self-manage chronic and acute conditions while going about their daily lives. Learning how to cope with a new diagnosis or condition is a challenge that touches on many social, emotional and logistical needs for both patients and their families.

On the flip side, after diagnosis most patients want to achieve a certain level of autonomy so they can live as freely as possible while managing their condition. This presents pharmaceutical manufacturers that recognize the value of support programs with an opportunity to expand service offerings aimed at better engagement and enhance treatment experiences for patients – ultimately improving patient adherence and outcomes.

Shift in pharmaceutical manufacturers

According to industry sources, more than 300 drugs have associated patient assistance programs and manufacturers spend about $4 billion per year on those programs. There has been a shift within pharmaceutical manufacturers in recent years, with increasing emphasis on holistic patient support programs rather than a narrow focus on medication adherence programs. Factors that have influenced this shift include: more informed patients with higher levels of health literacy; outcome-focused healthcare that ties reimbursement to patient outcomes rather than a fee-for-service model; and the rise of more complex, hyper-specialized targeted therapies that necessitate greater patient engagement.


A holistic view for developing patient support programs now ranges from early stages (detection of symptoms, seeking help or treatment, getting diagnosed) to later stages (seeking support, getting a prescription, starting treatment, adherence). But pharma companies struggle with the complexities of a holistic, people-centric view that includes diverse stakeholders with unique drivers along multiple touchpoints of the treatment journey.

Need-based self-care


Pharma companies realize that gaining this holistic view is key to designing a personalized experience that fits into a patient’s lifestyle, meets their needs, and eventually promotes the care experience both within the health system and at home. A patient’s needs across the experience are drastically different based on disease type and stage, socio-economic components and access to resources, among other factors. This, in turn, influences the level of support that should be prioritized based on the needs of the patient.

Prioritizing support solutions and allocating resources to the “right” strategic opportunity is another challenge that pharma companies face today, which can be solved by gaining deeper insight into the patient’s experience and their functional and emotional needs. This is where an understanding of the patient journey becomes critical. Identifying the factors that influence a person’s need for support at a given moment – and understanding how those factors are shaped and change over time – is key to developing services that address holistic patient needs and support patient-defined goals.

Taking the patient perspective

In order to do this work, it’s critical that companies collaborate directly with patients and end users to develop solutions. Patients are the experts in their own needs. Their input is necessary at the beginning of a project to uncover the deep insights that can lead to unexpected solutions. We call this process co-creation, and the outcome is to capture key needs and define opportunity spaces for design. End users also add immense value throughout the middle and later phases of a project, where their input is useful in evolving and iterating on concepts to ensure that solutions resonate and truly address needs as they are understood. We call this part of the process co-design and co-refinement, and it involves showing end users in-progress concepts and solutions and collaboratively iterating on final designs.

Journey maps are the result of ethnographic design research and co-creation with stakeholders. They’re a structured way to reveal the key components of a patient experience, in sequence and in a way that clearly outlines opportunities for interventions and design improvements that can be implemented to create a future experience flow. Ideally, different layers of a journey map include: key phases or events in the care experience; actions taken “jobs to be done” during each event/phase; roles and interactions between different stakeholders; and the emotional state of the journey protagonist within any key event or action. Mapping a patient’s treatment journey highlights the obvious barriers to things like access to clinical support, but also the less obvious emotional peaks and valleys that factor into a patient’s motivation and commitment to treatment – or the sometimes-overlooked role of family and friends in supporting treatment. Building rich context allows pharma companies a view into the patient perspective.

Gaining this “patient view” is a way to navigate the complexities of their experience by understanding its nuances, identifying leverage points and weighing different strategic opportunities. Opportunities identified across the journey are translated into service experience touchpoints, which, when woven together with the operational components necessary to enable those touchpoints, becomes the blueprint for a customer support program. In a recent study we followed the journey of a diabetes patient over a representative 16-year period of living with the chronic disease. Within their journey the patient goes from unaware of the disease, to diagnosed but poorly managed, to fully accepting the disease and successfully engaging in self-care with the support of healthcare providers. Through journey mapping we found opportunities to potentially engage patients earlier through improved access to specialty information and services.

Measuring impact

Measuring the impact of qualitative data and service design is still a challenge with no single, solid answer. This is because the desired outcome of a patient support service is more likely to be a behavioral change or a new relationship that take time to develop and can be difficult to quantitatively measure. Therefore, it’s ideal to set key performance indicators (KPIs) and identify a unique method of measurement based on what’s most relevant for the service and its goals. One of the most common metrics is customer satisfaction and user/employee engagement. User satisfaction and improvements can be measured using qualitative methods, such as user interviews and feedback on prototypes or pilots.

A standard quantitative measure that is commonly used is the net promoter score (NPS). Engagement can also be measured through quantitative and qualitative data, based on the context of the service experience. Efficiency of the way of working in terms of time and effort taken or saved is also an effective metric to measure the extent of impact.


Pharmaceutical companies are adopting creative methodologies and tools like journey mapping to navigate complexities and involve customers in the process of building patient-centric and need-based self-care experiences that enhance the heathcare experience. This way of working has the power to facilitate conversations, inspire action and alignment with a diverse group of stakeholders, and, most of all, make unheard voices heard and the unseen visible. In companies that have begun to adopt the approach, we’re seeing some initial success. One example of a leader in the field is Eli Lilly. The company has implemented a telephonic patient support program targeted at reducing reimbursement barriers to access and promoting adherence to the year-long regimen of Forteo, their osteoporosis product.

Since Forteo is a self-administered injection, Lilly saw fit to offer complimentary injection training services that can take place over the phone or in-person, depending on patient preference. Ongoing telephonic check-ins with patient support providers helps patients maintain the motivation to remain adherent and accountable throughout the course of their treatment.

Building a direct relationship between patients and pharma-provided services is relatively new territory, but one that is ripe with opportunities to create a virtuous circle of winners. If pharma focuses on the needs of patients, helping them access the necessary skills and knowledge to effectively manage their health conditions while achieving a level of autonomy, patients will return the favor with increased brand awareness and improved treatment adherence.