Genentech: Optimal Patient​ ​Pathway​ ​Study

Mapping lived experiences of IPF patients

Genentech, a biotechnology company sought to gain insight into the experiences patients diagnosed with Idiopathic Pulmonary Fibrosis (IPF) face in their care delivery journeys.

Objectives and Methods

A qualitative study aimed to shed light on the journey faced by patients with Idiopathic Pulmonary Fibrosis (IPF) and their caregiving loved ones. Along with a second researcher, I conducted in-depth, semi-structured interviews in patients’ homes to explore gaps in care during the path to diagnosis, through disease management, and into end-of-life planning.

Geographic Context

Study participants were recruited from four distinct regions, spanning both rural and urban communities. This deliberate mix allowed us to capture regional variations in attitudes and access to Interstitial Lung Disease Centers of Excellence.

Not Just Clinical

This study illuminated the human impact of IPF. Understanding the deeply personal mental models of patients and their familial caregivers as the disease progressed was crucial.

An interview guide supported exploration of patient’s experience from pre-diagnosis through ways of living with and treating the disease. Included, were discussions of end-of-life considerations for patients not to pursuing lung transplant as a treatment option.

Circles of Care

At the end of each interview, patients participated in a collaborative mapping exercise to identify key relationships and individuals involved in their care. The exercise helped to illustrate patterns of positive support and points of friction throughout their IPF experience.

Analyzing the Findings

Unpacking, organizing, and transforming raw conversations into findings that summarized patient's experiences of seeking an accurate medical diagnosis and the outcomes associated with receiving one.

Coding Framework

To organize and make sense of the the hours of interview transcripts we used coding to explore and identify themes, the frequency of occurrences, and the relationships between different codes.

To build empathy, we personified the struggles, emotions, and pivotal decisions faced by patients and their caregivers. This approach allowed our sponsors to better understand the personal experiences underlying their clinical data.

Personas

We created four distinct patient personas and one for their caregiver. Each captured a combination of demographics, psychographics, and situational factors that influence an IPF patient's journey.

Journey Maps

Comprehensive journey maps were then created for each persona, documenting their pathways from initial symptom onset, through their process to proper diagnosis, into disease management, and finally to transplantation or end-of-life care planning.

“I’ve just felt like I’ve been flying by the seat of my pants, you know. Stuff happens and you think ‘okay, well is that because of the disease, is that because of the medication?’”

Jackie, age 74

Summary

The research provided evidence supporting the conclusion that patients with Idiopathic Pulmonary Fibrosis (IPF) face challenges throughout their journey, including repeated misdiagnoses, a lack of clear treatment information, and a psychological burden ultimately leading to the erosion of trust in the medical system.

Observations

• Lack of education about this rare disease, difficulty in establishing the diagnosis, resource constraints, overwhelming demands on health care providers, referral and consultation challenges (including geography), and uncertainty about best practices for diagnosis and management are only a few of the problems.

• Patients are willing to try antifibrotics which are discordant from the views that patients unwilling because of quality-of-life issues.

• Patients had positive experiences with the multidisciplinary teams available during their lung transplant evaluation. 

• Patients feel positive when they attend IPF support groups and receive valuable clinical information about IPF and treatments.

Opportunities

• Grass roots education of primary care physicians, community health workers, nurses, and radiologists; telemedicine for health care providers and radiologists; and public disease awareness campaigns to improve the patient journey.

• Introducing an IPF team (with social workers) early on after a working diagnosis.

• Training, guidelines, and funding from the Pulmonary Fibrosis Foundation to standardize care for IPF patients, especially at ILD centers of excellence.