Empowering Patients’ Voices: Ethnographic Research in Healthcare

What are ethnographic research methods?

Ethnographic research methods have a unique ability to provide rich, in-depth qualitative data on people’s lived experiences. The researcher spends an extended period within the communities in which the research is being conducted and embeds themself in the research process (e.g., living with the participants, observing them).

The specific research techniques involved in an ethnography can be varied. However, ethnographers characteristically use a research technique called ‘participant observation’ which involves actively participating and observing everyday events over an extended period to produce detailed accounts and interpretations of everyday events¹. Other research methods such as informal interviews, surveys, document analysis, filming, and photography can be used to supplement participant observation where needed. For example, in-depth interviews can be carried out with key participants to ask questions left unanswered during observation or to cross-check discrepancies between what participants say (heard during interviews) vs. what they do (observed during participant observation).

What unique insights can you gain from ethnographic research methods?

Ethnographic research is unique in that it can provide a ‘thick’ description, providing context and meaning to human actions, as opposed to being limited to factual accounts/interpretation of what people say during other research methods such as interviews/surveys/focus group discussions. This is particularly useful because people may not always be able to provide a deeper perspective in a short 30 min to 1-hour interview. Due to the in-depth nature of the research method, ethnographic research has also been criticised for being time-consuming. However, due to the rapid nature of the recent outbreaks (the Ebola crisis, covid-19 pandemic), ‘rapid ethnography’ has become appealing in the healthcare sector within the past decade². Rapid ethnographic research methods aim to compress a longer ethnography into short (90 days or less) research projects which are more². The techniques can be used to evaluate specific interventions or implementation projects such as patient support programmes³.

Using ethnographic research methods in patient-centred research and clinical trials

Ethnography can provide in-depth insights into a patient’s lived reality with a particular medical condition⁴. It can provide data on wider social and structural themes such as the healthcare system, the socio-political context of illness, and interpersonal relationships. These insights can not only bring out the patient’s voice to the forefront but also ensure that this voice is contextualised within the wider socio-political realities.

Ethnographic research methods have been used in clinical trials to set the direction for early clinical development⁵. Ethnographic methods can shed light on unmet needs and misalignment between patients’ experience of their disease and doctors’ and pharmaceutical companies’ perceptions of it. This is particularly useful for complex and chronic conditions and the insights gained may help pharmaceutical companies understand and address issues such as non-adherence⁵.

References

1. Ingold, T. (2014). That’s enough about ethnography! HAU: Journal of Ethnographic Theory, 4(1), 383–395.

2. Vindrola-Padros, C., & Vindrola-Padros, B. (2018). Quick and dirty? A systematic review of the use of rapid ethnographies in healthcare organisation and delivery. BMJ Quality & Safety, 27(4), 321-330.

3. Ackerman, S. L., Sarkar, U., Tieu, L., Handley, M. A., Schillinger, D., Hahn, K., … & Lyles, C. (2017). Meaningful use in the safety net: a rapid ethnography of patient portal implementation at five community health centers in California. Journal of the American Medical Informatics Association, 24(5), 903-912.

4. Strudwick, R. M. (2021). Ethnographic research in healthcare–patients and service users as participants. Disability and Rehabilitation, 43(22), 3271-3275.

5. Gargeya, Y., & Holme, M. (2013). “Out of the Labs”: The role for ethnography in guiding clinical trials. In Ethnographic Praxis in Industry Conference Proceedings, 2013(1), 161-170).