Using Digital Ethnography to Explore Patient Insights and Healthcare Experiences
Online spaces are increasingly important nodes of social contact. As researchers, our methods need to reflect changes in human behavior.
Our blog previously approached this topic by showcasing our work using mobile ethnography. Now, we share our findings from a project using digital ethnography to discover cancer patient insights.
What is digital ethnography?
Digital ethnography is ethnography conducted through digital means. Ethnographic material can be drawn from online communities, blogs, chat rooms, social media, or any other kind of digital source.
There are downsides to conducting ethnography digitally instead of in-person. For instance, the researcher is unable to see and interpret bodily gestures and visual cues. However, digital ethnography also provides substantial benefits.
For instance, this method:
- Provides access to hard to reach populations (geographically or in terms of how
marginal the topic is) - Removes the need for recruitment (as participants are already discussing the
topic of interest) - Minimizes the impact of research processes on results (as answers arise in previously existing contexts)
- Provides quick access to massive amounts of data
How can digital ethnography be applied to generate patient insights?
MDRG used digital ethnography to better understand healthcare experiences, specifically the factors generating patient insights towards trust or distrust in healthcare capabilities.
We focused on cancer treatment and care. For this study, we collected and analyzed approximately 500 comments on posts that had seen activity in the largest cancer community on Reddit during May and June 2017.
We found online activity indicating that healthcare providers sometimes struggled to gain the trust of cancer patients and caregivers. Patients and caregivers sometimes turned to online communities to seek out reassurances and advice from people in similar circumstances, particularly when they have doubts about the information they received from their doctors.
Patient insights: trust factors
Certain elements affected how much a patient feels they can trust their healthcare provider:
- Distrust is often produced by discrepancies in diagnosis, ambiguous information, lack of clear treatment paths, multiple sources of conflicting information or difficult interpersonal exchanges with medical practitioners.
- The types of institutions most likely to generate patient trust in healthcare capabilities include large institutions with good reputations backed by multiple sources that specialize in a patient’s cancer type.
- Patients trust their providers more when they received second opinions from other doctors or institutions, when they experienced a sense of continuity offered by the consistent and cohesive dispersal of information, and when medical practitioners communicated effectively by simplifying medical language without being reductive or sugarcoating the prognosis.
Conclusion
This project demonstrated the knowledge and patient insights that can be gained through digital ethnography. As a form of exploratory research, digital ethnography allows us to become familiar with specific groups of people and identify analytical themes of interest that can inform subsequent research.