CASE STUDY

Leveraging Ethnography to Understand the Burden of Disease

biopharma

Uncovering the Burden

There are innumerable traditional quantitative and qualitative studies aimed at understanding burden of disease (BOD) in the Rheumatoid Arthritis (RA) space. However there have been few efforts to corroborate and correlate the results of the two different methodologies using ethnography.

Strategic Foundation

  • Ethnography

Deliverables & Tactics

  • Ethnographic Research Study
  • Documentary Filmmaking
  • Stakeholder Maps (Journey & Expectation)
  • Exhibition Posters
  • Published Abstracts and Manuscripts
PROGRAM OVERVIEW

LIFT partnered with a leading pharmaceutical company and patient advocacy organization to conduct a post-marketing mixed methods study grounded in ethnography to explore the burden of disease (safety and lived experience) for adults living with RA.

OBJECTIVE

To leverage qualitative methods with quantitative survey instruments to understand the lived experience of RA patients and their caregivers.

Hearing the STORY IN THEIR OWN WORDS

So much about ethnography is simply being present and listening. Throughout the course of this project, we listened. We listened to each person, in person, over and over again. By sitting down in their homes, watching the recording interview, and transcribing each word, we began to uncover the human truth at the core of this burden known as RA.

GOALS
Our goal was to add depth, texture and context to our clients’ understanding of the RA patient experience. Empirical insights would ultimately help:

  • Providers deliver better care and more targeted therapeutic experiences
  • Patients achieve better outcomes when using biologics
  • Marketers re-imagine the ARA patient experience and frame a more compelling brand story for drug manufacturers.
  • Academic researchers craft more compelling literature around the study of BOD and PROs.
TARGETED AREAS OF FOCUS

We focused on providing invaluable insight into living with RA: practical and emotional realities, gaps, frustrations, etc. We also focused on assessing the value of qualitative ethnographic inquiry compared to the standard quantitative survey instruments and to explore potential gaps that may exist in quantitative surveys.

CHALLENGES
RA is traditionally assessed using standard surveys/questionnaires to evaluate clinical progression, outcomes, and physical function. While these methods uncover a great deal of information, they are often unable to delve deeper into the lived experiences of RA, which are important to the patient but are rarely quantifiable.
METHOD
This study employed a mixed method design with both qualitative and quantitative elements. Ethnographic in-home immersions were conducted with adult patients with RA. We observed and interacted with patients and their family members in the context of their everyday lives. Participants also completed a questionnaire that combined the Health Assessment Questionnaire and the Visual Analogue Scale for pain and fatigue.

Outcome

The insights team developed a comprehensive narrative that was shared with our client partners through a set of deliverables. Those outputs took the form of a designed ethnographic insights report, two published manuscripts, multiple patient personas, a detailed patient journey map, and a documentary film. Our client also gained a rich understanding of RA patient and caregiver perspectives on the coping strategies required to live with chronic pain, the factors that affected their feelings of success, the validity of patient-reported measures, and more.