Here at HRW we love to seek out the most innovative methodologies and ‘stress test’ them to ensure robustness in data quality. To do this, we host a wide range of self-funded studies; one of which explored the private vs. the public sphere looking into the voice of patients with Major Depressive Disorder (MDD).

Our hypothesis going into this research was that we would be able to identify a different patient voice using social media listening vs. Google Trends Analysis. We hypothesized that people tend to carefully curate what they post publicly on social media but are probably not quite so guarded with what they type into Google.

Google readily provides a platform to sift through all this search data and identify search trends. This data is all aggregated and anonymised so no personal information can be obtained, but the insights are generated from a space which we probably don’t recognise as ‘public’ in the same sense as social media.

Our research was presented at the EPHMRA conference and was also part of our Innovation Webinar Series in 2021. During this research we explored the language used by patients diagnosed with Major Depressive Disorder (MDD) to describe their symptoms of anhedonia (the loss of ability to feel pleasure).

To request access to the webinar, please click here: http://bit.ly/3Di2of2

Overall, this self-funded research allowed us to capture two sides of the patient voice. Social Media Listening (or the ‘public sphere’) provided us with the emotive storytelling and the thoughts of patients diagnosed with MDD. We were able to capture real life stories of their highs and lows throughout their diagnosis. Those diagnosed years ago were providing advice to newly diagnosed patients (e.g., about different pharmacological / non-pharmacological treatments). Patients were also simply sharing tips and tricks about how to best manage the condition – community spirit was evident.

Google Trends Analysis (or the ‘private sphere’) provided us with an insight into the HCP-Patient consultations and, more importantly, unanswered common questions which patients were unable / uncomfortable asking their HCPs.

As with any methodology, there are some limitations with each approach:

Good Trends Analysis:

  • You are unable to capture the rationale behind ‘why’ a certain question has been asked
  • You do not know who the specific respondent is: it could be a patient, a HCP or someone conducting research (like us!)

Social Media Listening:

  • We can only access data which is publicly available. This means private forums (e.g., of patient associations or Facebook Groups) will never be part of our search parameters. We know that these are critical for information sharing in some conditions which means the data we collect might not be fully complete
  • Market analysis and posts are all dependent on geolocation data being available to us (e.g., in the bio of users)

This research highlighted again that a multifaceted approach might always be needed to fully encapsulate and understand the patient voice: simply asking questions in an interview or survey might ‘miss the mark’ and leave some unknown unknowns which might impact on the potential launch or a product. Whilst interviews can provide the “why” and more depth, there are digital methodologies that can further access the true patient voice, which should not be disregarded.

If you have any questions about the research, please do not hesitate to get in touch.

By Abigail Graham

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