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What is Patient Journey?

What is patient journey? There is often overlap and sometimes interchangeable terminology among patient journey, patient flow through the healthcare system, and the treatment buying process. But to put it simply, the patient journey is the practical and emotional story of people with a certain condition – and a full patient journey should be all encompassing from touchpoints with the healthcare system and other integral stakeholders, the treatment process, and the overlay with the impact of the disease on people’s lives. The patient journey is the foundation on which subsequent research and strategy is built.

In rare diseases, the patient journey can be even more critical, as there may be a lack of internal knowledge, published data, or even currently available treatments. Full patient journeys are mostly qualitative in nature (though many include some quantitative components), multi-modal, and multi-stakeholder. It is beneficial to first have a review of any available sources such as secondary data or social media listening which can be used to inform development of a “job map” – an initial hypothesis of the journey through the healthcare system and interactions with other stakeholders. This map of the patient’s journey provides the foundation for identifying critical points along the pathway for the patient and associated stakeholders (to learn more about job mapping, click here).

To fully understand the patient’s perspective, we recommend including both a group and an individual component.

  • An online community is a great research method to give patients opportunity to interact with each other, especially within the rare disease space where they often feel isolated. This platform provides rich, insightful data and allows patients to feel less vulnerable. Creative exercises are easily executed in the community as well, providing the deep emotional findings that are key to understanding their journey. In many cases, the patients bond and form friendships, continuing discussions long after the study ends.
  • An individual approach is best accomplished through in-home ethnographies. This allows us to see how their condition fits in with the rest of their lives. For example, with hemophilia patients, we observe the storage of their treatments and equipment within their home, the self-administration of treatment, their daily activities (or lack thereof), their interactions with caregivers and others.  We can go on errands or to a doctor’s appointment with them and get a glimpse into their lives that would be hard to convey through interrogational research. We can also get feedback on our initial job map, to determine what other stakeholders are key to the journey and ensure they are covered in the research.

While the patient is the center of the research, other stakeholders play a critical role in their care and their perception of management of their condition. To understand the patient journey with a holistic view, it is important to take into consideration how other individuals and resources contribute to the patient’s experience.

The full patient journey should be filled out with other critical stakeholders – physicians, nurses, pharmacists, caseworkers, caregivers, support groups, etc. as relevant to the particular journey. We seek to understand not only the practical aspects of their interactions with patients, but also their attitudes, beliefs, challenges and needs as they pertain to patients with the condition.

In the end, the patient journey identifies:

  • Various paths that patients take, determining factors, and the emotions associated along the way
  • Key stakeholders and touch points throughout the stages of the disease, including roles and level of influence
  • Opportunities at each stage for your brand, whether it be a general need such as public awareness of the disease, or more specific such as prescription drivers at various touchpoints
  • Foundational information on which to continue development of your brand