Case study: How we used digital ethnography to evaluate the quality of life of patients living with head and neck cancer

The challenge

Despite its prevalence, H&N cancer does not receive or benefit from the same levels of public awareness or attention as more common cancers and there is a lack of understanding of the severe and lasting impact that cancer can have even after patients are cancer free. Our client wanted to capture patient narratives; individual and shared experiences of living with H&N cancer.

The solution

A patient centric approach grounded in empathy vividly brings alive unfiltered experience of patients

1. PAG partnership: Knowledge and experience shared by PAG advocates helped in developing ‘patient centric’ research materials. PAG platforms created awareness and interest in
   study among patient communities which aided recruitment.
2. Digital ethnography: Grounded in empathy, our approach enabled us to get into the hearts and minds of the patient through observation and uninterrupted listening. This allowed us to understand the journey through the lens of the patient
   and their family.
3. Cognitive journaling: A combination of extended in-depth interviews followed by a week-long journaling task was unanimously perceived as therapeutic by patients.
4. Sociologist: The research was conducted by a specialist in social psychology with extensive experience in researching vulnerable segments
5. Unpacking a long and complicated cancer journey: The extended engagement allowed patients to gradually unpack a cancer journey that can last for years with multiple treatments across numerous hospitals and medical teams.
6. Consistency builds trust: Patients engaged with one researcher over the study which helped them to open up and feel comfortable in sharing feelings of self-hatred, low self-worth, self-harm, and suicide.
   
   

The outcomes

• Demonstrated the necessity for innovative treatments that offer meaningful QoL
• Supported new policy plan to make treatments more accessible using emotionally engaging case studies
• Collaborated with cancer care stakeholders to innovate patient support programmes
• Developed interactive virtual model to drive awareness of patient experience among patients and clinical stakeholders

Our ethnographic approach mapped the H&N cancer patient journey from pre-cancer to post-cancer and the resultant shift in identity, attitude to body, and life. The journey is shaped by three key aspects – the events, the experiences, and the effects. The outputs demonstrated these in every aspect of the patient’s life including daily routines, home arrangements, relationships with family and healthcare stakeholders, intimacy, food and nutrition, mobility, personal care, their social and work-life as well as their navigation of the COVID-19 pandemic.

This project was a finalist in 2021 Best of Business Intelligence Awards ‘Best Patient-Centric Approach’ category having been highly commended by the judging panel.