The patient journey

Patient-centricity is now at the heart of many healthcare systems and pharmaceutical companies' philosophies. In addition, many patients are now using the internet and social media to connect, engage and inform themselves on healthcare issues. So how can pharmaceutical companies get to the heart of what a patient experiences, from the first onset of symptoms to learning to live with the condition? And why is it important for them to do so?

At the outset, it is important to articulate that a patient journey is not a care pathway. It does not merely follow a patient through the physical path of medical and social care, but dives deeper into understanding the patient's experience of a condition, and how that experience is created through interactions with other stakeholders, such as healthcare professionals, caregivers and other patients.

Looking at a disease or chronic condition through the eyes of a patient is one of the most insightful ways of determining the patient's most pressing support and educational needs and how best to address those needs. By examining the journey a patient takes, it is also possible to identify the needs of the healthcare professionals, caregivers and other stakeholders who interact with the patient at the various stages along the journey. It is important as well to examine patient-to-patient interactions and the interactions patients have with patient support organisations in order to gain a holistic picture of what the patient feels, experiences, thinks and how he or she behaves as a result.

Very often the focus of market research commissioned by pharmaceutical brand managers is biased towards understanding the prescribing habits and needs of the prescriber. But the prescriber usually has a limited amount of time during a consultation to devote to educating and counselling the patient and, once the patient gets home, it is entirely up to him or her whether to adhere correctly to the treatment. In some cases, patients may not fully understand why they are even taking the medication prescribed for them. They may also have received little or no education to prepare for the types of side effects they may experience.

It is vital to understand and identify the barriers, drivers, challenges, opportunities, emotions, attitudes, beliefs, behaviours and influences along the patient journey and the implications these factors have on the brand. Brand managers need to ask themselves:

• Do I really understand the practical day-to-day challenges of living with the disease?
• How can we make the healthcare professional's job easier in terms of supporting the patient?
• What support do patients actually need and what would make a real difference to their lives?  
• How can we support the patient and the healthcare professional so that they have a positive experience of our brand?

By taking the time to identify the journey a patient typically takes, it is possible to highlight barriers to treatment adherence, common roadblocks and diversions to treatment success, missed interactions and, ultimately, opportunities for a pharmaceutical brand.

Key junctures
Essentially, if the patient journey is clearly identified, then supportive, educational materials can be provided at key junctures and decision-making stages to benefit not only the patient but also the brand. These educational materials may be aimed at the patient or the healthcare professional, or they may be counselling tools to support both the patient and healthcare professional during their interactions and conversations in clinic.

A patient journey is a global representation. How a patient experiences a chronic condition or disease is similar across the world. However, what differs from country to country is how the condition and the patient are managed under different healthcare systems and the impact cultural factors have on patients. These differences need to be identified before tailored educational materials can be developed that are suitable for local markets.

How to map
There are a number of ways to 'map' the patient journey. A combination of methods can be used to suit specific needs and the existing knowledge base. It can be useful to begin with a review of previous patient research commissioned by a pharmaceutical company or an advocacy organisation. Alongside this, a review of academic research on the disease or condition can identify descriptive and observational studies that may reveal additional interesting insights. 

Once secondary data sources have been reviewed, qualitative research can be undertaken to build on these insights. One way is to conduct in-depth interviews and incorporate a patient mapping exercise.

Focusing on the patient voice in the qualitative phase of the research is fundamental. By conducting traditional in-depth interviews, alongside innovative and interactive research techniques, an emotional 'map' of experiences can be created for each patient. Including the caregiver at this stage can also be a useful way of gaining further insight into the lived experience of patients and those who support them.

Ethnographic video diary
While the in-depth interviewing can help to understand the retrospective experiences of the patient in more detail, using an ethnographic video diary as part of the study can generate insight into current emotions and give a clear picture of the day-to-day experiences of living with a condition.

Similarly, exploring conversations that occur in social networking spaces can also provide glimpses into the current issues facing patients.

Applying a grounded theory approach to the data collection process is key to ensuring that the data is reliable. The main principle applied to creating a patient journey from this approach is to collect data until 'saturation' point is met. This means that interviewing and probing continue until no new data is produced.

The collected data are then analysed using grounded theory principles. This technique focuses on creating categories and filtering the data through open coding to uncover the evidence to develop the patient journey from pre-diagnosis to the present day. An important part of this analysis is conducting follow-up interviews with patients and healthcare professionals once the patient data has been collected to check researcher assumptions. It allows for triangulation of the results, which adds to the reliability of the qualitative data. 

Once the data has been analysed it is possible to put together a visual representation of the 'typical patient journey' for that particular disease area. This should capture the perspectives, tensions and frustrations of the patient, including those that may occur due to interactions or influences from others, such as healthcare professionals, payers or caregivers.

It may be possible to break the journey down into stages such as misdiagnosis, diagnosis, beginning treatment and living with the disease. Along the patient journey points in time should be noted that reflect critical moments. These can be emotional revelations or physical events, such as starting treatment or finding support from a patient organisation. These events may be characterised by tensions, frustrations or unmet needs, which may, in turn, lead to a decision being made to go in one direction or another. These decisions may stem from the patient, healthcare professional or payer. At each of these critical moments or junctures there may be an opportunity for a pharmaceutical brand to have an impact on the patient via his or her healthcare professionals. Once identified, brand teams can prioritise these times and identify educational needs and opportunities for tactical interventions.

The identification of these critical moments can also inform creative work, for example by providing guidance and vision to agency staff working on the look, feel and tone of the tactics. They can provide insight into appropriate formats for counselling tools and overall better outcomes when implementing a global brand strategy.

From a global perspective, the patient journey visual can be used as a discussion point with affiliates to identify country-specific requirements. It is then that cultural differences emerge and different junctures in the pathways are highlighted according to the healthcare systems in each country. Affiliates familiar with their own markets can identify which healthcare professionals are interacting with the patient at various junctures, where precisely in the journey this happens and what options the patient has at those points. Identifying these allows a pharmaceutical brand to intervene and provide tailored patient support.

Developing successful measures
But why go to the trouble of producing a patient journey? What can a pharmaceutical company get in return for investing in patient education?

From experience, it is sometimes difficult to demonstrate a return on investment for educational programmes. It is important to justify the expense of patient support programmes, so various programme measures must be put in place. These include measuring demand and uptake, awareness levels, behaviour change, business impact and overall health-related outcomes.

Summary
A patient journey is a visual tool that develops over time as understanding of the patient experience grows. One of its main objectives is to identify the critical moments that have the potential to influence patients, healthcare professionals and other stakeholders and so identify areas to focus brand strategy. One way of doing this is by providing insightful educational support based on real patient and healthcare professional needs.

There are often numerous critical points in a patient's journey where gaps in knowledge, skills and motivation can prevent them from taking action. But with the right education, a patient can overcome barriers and cross the bridge to better health outcomes.

The Author
Sarah Bundock is head of the Health Education Research team at HealthEd. She has over 10 years of experience in healthcare market research. During this time she has undertaken a broad range of research projects, combining both quantitative and qualitative methodologies, to provide insights into patient experience and stakeholder impact. She has been responsible for the development of patient journeys for a number of conditions, including diabetes, multiple sclerosis and pulmonary hypertension.