Achieving Patient Centricity with the Patient Journey

Posted in on October 2021

‘Patient centricity’ has been talked about in the healthcare industry for many years, but many pharmaceutical and MedTech companies are still not sure how to make it a reality. Developing a thorough understanding of the patient journey can help decision-makers across an organisation better understand the patient’s experience, so they can develop products that truly address their needs.

A window into the patient experience

On a basic level, a patient journey is a customer journey focused on health. It is a deep dive into the experience and challenges of patients suffering from a particular condition, from the initial symptoms to their diagnosis, treatment, and potential relapse – and sometimes, their road to recovery. It is used across therapeutic areas and looks not just at the clinical and physical aspects of the condition, but also at the patients’ emotional, social, and even financial experience with their disease. By exploring the trials that patients face at each stage of their journey, the research can uncover key unmet needs.

The foundation for patient-centric brand building

Our experience has shown that the most successful healthcare brands are not necessarily the first to market, or even the ones with the most outstanding clinical data. Rather they are brands that were built around solving specific problems that patients experience. Patient centricity is not just a buzzword: it is key to commercial success – even when the patient is not the final decision – maker. There is a tendency in healthcare to overestimate the importance of clinical superiority and underestimate the role of user experience for success. This is understandable, given the time, money and effort that goes into developing products. Yet no one should consider developing and launching a new product without first understanding who the end user is and what their needs are.

The patient journey is integral to patient-centric brand building. The pain points and disconnects that emerge from this exercise represent potential entry points for the product to offer better support. These are instrumental to shaping a brand vision and purpose. To maximise the strategic impact and return on investment, we generally recommend conducting the patient journey research at an early stage in an asset’s development. The identification of milestones and unmet needs along the journey is a key part of initial market understanding and should inform brand design and positioning from its inception.

Figure 1: Patient-centric brand-building

Patient insights can also flow into market access and even inform clinical trial endpoints. For example, we once conducted a patient journey on incontinence. During the project, it became clear that the patients’ biggest source of fear was not incontinence itself, but rather the feeling of urgency, which significantly affected their quality of life. As a result, the client established urgency as a new endpoint in the trial, and it eventually became standard in the therapy area.

Even if that early window has passed, however, a deep understanding of the patient’s experience remains valuable at every stage of the product’s development – and even after launch, for example when re-positioning a brand or designing patient support initiatives.

Patient field work as an art

Identifying the right participants for a patient journey is often a challenge – and yet it is the basis of any successful project. Patients need to be willing and able to share their personal experience, often over a longer period. Relying solely on panels is rarely an option, especially when studying life – altering or rare diseases. Thank fully, many patients are keen to give back and contribute to the development of better solutions for their peers by sharing their experience – but finding them can be difficult. A skilled recruiter will adopt a hybrid approach, leveraging strong long – term partnerships with patient support organisations, relationships with informal patient networks, referrals from healthcare providers or contract research organisations (CROs) and social media.

Local norms vary ac ross countries: In Germany, fieldwork can prove challenging due to compliance considerations and a relatively high degree of suspicion towards the pharmaceutical industry, so referrals from healthcare providers tend to be dominant. US fieldwork, in contras t, will usually leverage support networks which promote disease area recognition, whereas healthcare providers do not refer for market research due to strict HIPPA privacy laws.

Recruiting patient advocates can be an option, but they are generally much more highly educated in their disease than the average patient. While there is a degree of inherent bias to consider – patients who are willing to take part in market research tend to be slightly more articulate, better educated, and a little younger than the typical patient for the condition – good research should aim to minimise this by including a range of patient profiles, backgrounds, and experiences.

Sharing your experience with a medical condition is a very personal decision, and it can make a respondent feel vulnerable. For the patient to open up, they need to trust the research team. An experienced fieldwork team will take the time to talk to the respondent and give them a sense of trust prior to the research itself. This, together with skilled moderation, will ensure a successful interview or research task. For longer-term approaches, like video diaries or online communities, regular engagements with respondents and encouragements to complete the task are an integral part of the process.

Figure 2: The patient ecosystem

While the patient’s voice is paramount and should be at the core of the research, there is a tremendous amount of value in considering the patient’s ecosystem holistically: the caregivers, nurses, and physicians can all contribute a unique perspective. Caregivers can provide unique insights into the true impact of the condition on the patient’s emotional state, lifestyle, and quality of life, which the patients themselves may minimise. The dynamics between caregivers and patients are also extremely important, as they play a role in the patient’s decision-making. Nurses are often very well attuned to the thoughts, emotions, and concerns that patients have, especially around treatment. Finally, hearing the physicians’ perspective enables us to uncover the disconnects between what they are saying and what patients may be hearing. Depending on the market, financial and reimbursement considerations can also play an important part.

Combining research approaches for deeper insights

We normally approach the patient journey qualitatively to capture a nuanced picture of the pathway in all its complexities. Respondents need to look back to their past experiences, often over longer periods of time, and share very personal stories, which is difficult to do in a single one-hour interview. Approaches with an extended engagement, like mobile ethnography, video diaries and online patient communities, give respondents time to establish trust, revisit their memories, and open up to the research team over the course of several sessions. Online communities can be particularly effective by encouraging open discussions between patients who share similar experiences. Disease-related methodological limitations should be considered: for example, screen time should be limited for some neurological conditions, whereas mobile-based apps may not be appropriate for those with dexterity issues. For some conditions and markets, there may also be cultural taboos to overcome.

Offering a range of tasks allows each person to express themselves through the medium they feel most comfortable with – whether that is a letter, a video, or a collage. We also conduct follow-up interviews to discuss aspects we want to explore further and use a range of projective techniques to uncover nonconscious drivers of behaviour. Depending on the disease area, we may complement this with a social listening piece to gain an initial understanding of the prevalent sentiment around the disease, including the experiences and questions that are being discussed online. This can help uncover insights which might not be readily shared on a research platform.

Table 1: Research approaches

A large proportion of patient research was conducted digitally before the pandemic, and this has generally continued to take place. Unfortunately, in – home interviews, which were often valuable to fully grasp the impact of the condition on the patient’s lifestyle, are not currently possible – but we have found that we can quite effectively recreate these virtually, by asking the patient to share photos or videos of their home. Digital research tools have become increasingly sophisticated over the last few years, lowering barriers and enabling respondents to share rich data with as much effort as a post on social media. It is likely that technological change will continue to provide us with smarter, more agile ways to get closer to respondents regardless of geographical constraints.

Embedding the patient journey into a successful brand strategy

Patient journeys have become increasingly popular over the past decade, even as the focus of healthcare strategic marketing has turned from physicians and payers to patients. Yet they are not a typical market research project. Their goal is to enable decision – makers to step into the patient’s shoes. This can take time, and the process does not end with the research. Understanding the patient’s experience and uncovering the milestones is only the first step. The healthcare company needs to socialise these insights and translate them into brand implications by determining how their product can best help patients: Deciding which key pain point to address will be the basis for brand positioning and messaging.

Figure 3: Building on the patient journey

Effective outputs for patient journeys aim to share a large amount of information in an accessible way – often through a combination of posters, videos, and interactive online tools. This rich tapestry is necessary to convey genuine emotions and let a wide audience experience life in the patient’s shoes. Yet distilling the truly insightful discovery from deeply moving or just merely interesting findings can be a real challenge, and teams will need to go beyond emotions to find brand purpose. Some organisations, especially if their approach to marketing has historically been focused on clinical data, may need more support to understand how to effectively implement patient centricity. Some stakeholders may feel uneasy about putting the patient experience at the heart of the brand, preferring more ‘tangible’ benefits. Yet the patient experience can and does drive powerful brands. It can be worthwhile to engage external consultants who can provide guidance and tools to facilitate this transition.

A patient journey tends to be a highly visible project internally, with a broad range of interested stakeholders – from medical to marketing, market access and beyond. Where possible, these stakeholders should be involved from early on so they can have the opportunity to share their needs and expectations and shape the objectives. The patient journey may be a versatile tool, but it should not attempt to do everything: healthcare provider experience, treatment pathways, and funding flows should still be explored separately, although they will also feed into a patient – centric model of the market. By adopting a flexible, open-minded, and collaborative approach, organisations can make sure they make the most of the patient journey, and truly put patient centricity at the heart of their strategy.

About the author

Dr Anne-Sophie Lenoir (anne-sophie.lenoir@branding-science.com) is a Director at Branding Science and heads the Berlin office. She has 10 years of experience in research-based roles, including six years driving international projects in healthcare consulting and industry. A behavioural scientist and engineer by training, she has experience designing and leading global market research and strategic marketing engagements in the pharmaceutical, medical device, and medical products industries. She is passionate about early-stage strategy and helping clients make strategic decisions that result in positive change for patients. Sophie holds a PhD in marketing from the Rotterdam School of Management, Erasmus University.