Using online collage-building to understand the patient’s experience

Editor's note: Jonathan Weiser is senior research director, healthcare at BuzzBack, a New York research firm.

Health care marketers are increasingly focused on more patient-centric approaches in order to develop effective ways to bridge the gap between patient and health care practitioner communications. What used to be solely directed to physicians as prescribers and influencers for patients now starts with patients. Here’s why: Understanding the patient experience begins with grasping a wide range of emotions and experiences that occur, intensify and evolve at key stages – from pre-diagnosis through diagnosis; to living with the disease and its treatments and managing outcomes; even at the point of imaging what their life will be like beyond the current stage. Effective patient-journey research is about uncovering the deepest triggers of feelings and behavior to enhance the patient experience. This enables health care marketers to develop communications that improve patient-doctor interaction, ultimately leading to greater compliance.

To date, many researchers have relied on in-depth qualitative research for this understanding which, while effective, has drawbacks, including being (1) cost-prohibitive to conduct with many patients (in terms of reach and travel costs) and (2) less conducive to generalization across a broader population.

These drawbacks can be mitigated by reaching a quantifiable sample of patients via an online patient journey-mapping exercise. This approach uses imagery as a catalyst via a custom application of online collage-building to amplify the patient voice and facilitate in-depth expression of patients’ experiences, behaviors, emotions and needs at various stages of their condition.

Online exploratory research study

As part of a three-step approach to mapping the journey, 160 U.S. rheumatoid arthritis (RA) patients were solicited to participate in an online exploratory research study. First, patients reacted to a series of standard questions about each of the stages of experiencing RA (e.g., symptoms, location of pain, experiences with health care providers, emotions experienced, type of information sought, etc.). Then they participated in the online mapping exercise where they provided both verbal and visual input about their experience at each stage. This was achieved via an interactive collage-building tool for deeper, more personal, visually-metaphoric self-expression. This technique reduces dependency on rational and conscious thought, therefore eliciting the respondent’s inner story. Finally, based on the individual responses to the mapping exercise, patients were segmented (through quantitative analysis), providing greater insight to how various factors impact experience.

Findings from this patient journey-mapping exercise, which allowed respondents to express experiences both visually and verbally, revealed that RA patient experience varies greatly at each stage of their condition:

Pre-diagnosis: Many RA patients feel worry, concern and fear, coupled with a great sense of confusion. They know they are experiencing pain but do not understand its source or cause. For some, pre-diagnosis is a long, drawn-out period, whereas others experience an extreme onset of pain that causes them to seek immediate treatment.

Diagnosis: This is a complicated time for RA patients, characterized by feelings of both relief and fear. The relief comes from an understanding that now they know what they’re facing, so they can begin treatment. Their fear comes from understanding that they are living with a chronic condition, may potentially face permanent damage and have to take medication for the rest of their lives.

Post-diagnosis (three months after diagnosis): This tends to be the “figuring it out” time period, where many RA patients start to make lifestyle changes, take medications and see relief. However, others who do not start to feel physical relief associate this period with intense emotional despair.

Living with RA: For many, this period is one of uphill battles, some at peak points. Still, some feel they have their RA “under control” and don’t feel as if RA runs (or ruins) their lives. They talk about compromises they have had to make living with the disease.

Future with RA: Most are hopeful that with lifestyle changes and proper medications they can control their condition. Others, however, are less optimistic and fear their condition will continue to get worse and worse.

Four distinct experience paths

Further analysis of respondent emotions reveals participants followed one of four distinct experience paths over time: Gets Better and Better; A Few Pitfalls but Mostly Better; True Roller Coaster; Downhill Battle. Quantitative findings indicate these four pathway-based patient segments differ greatly in terms of demographic profile, experience with RA and their current treatment.

Patients with a more optimistic view (the first two pathway segments) tend to have been diagnosed within shorter periods of time (still optimistic), are more likely to be receiving better treatment (i.e., taking a disease-modifying anti-rheumatic drug/biologic therapy), are more educated and more likely to have commercial health insurance (better access to care). Whereas those who are on the other end of the spectrum tend to be suffering from more severe RA symptoms, are more likely to have already had surgery for their RA, plus are more likely to be taking an prescription or over-the-counter pain medication (as opposed to a disease-modifying anti-rheumatic drug/biologic therapy).

With health care marketers and researchers continuously challenged by time and budget constraints, this method of patient journey-mapping provides a new way to deal with both challenges. First, it outlines a new online approach to tackling complex patient emotional issues, with a robust methodology that includes inherent cost efficiency and faster turnaround. The patient journey was, until not long ago, revealed solely through the eyes of physicians. But now, with an online methodology, the journey provides greater understanding of the patient’s own experience, expressed in their voice with visual and verbal storytelling. This approach reaches beyond standard verbal interaction, incorporating imagery and projective techniques in a non-lexical, indirect format to reveal personal feelings and to tap subconscious thoughts, where most emotion is expressed and comprehended. As a qual-quant approach, it can also be augmented with traditional qualitative methods, such as patient IDIs or self-video ethnographies.

This research approach can help health care marketers to better address the needs of individual patients – at specific stages of their condition – by incorporating a more empathetic and deeper understanding of the patient experience into developing brand strategy. Specifically it empowers marketers to: develop more tailored messaging to increase awareness, education and compliance at specific stages of patient experience; create highly-targeted patient support programs to influence improved outcomes; and conduct truly need-driven product development.