Why do patients and carers post online feedback?

There is a growing trend of patients and their carers posting feedback online through public forums such as social media. And there are two main reasons why they do this:

• To inform healthcare services (positive and negative) which may result in tangible changes to themselves.
• As an ‘act of care’ in itself for the benefit of other patients and the healthcare system in general.

It’s this second point that is of particular interest.

Research from the UK shows that 42% of internet users have read some form of healthcare-related feedback online, while only 8% have provided feedback about their own experiences. This pattern is consistent with health-related social media use, where the number of people reading about healthcare experiences far outstrips those providing it.

So, how can we better understand why patients post feedback online, and how do these patients understand the relationship between their feedback and the improvement of care? This question was addressed by Dr Fadhila Mazanderani, Chancellor's Fellow at the University of Edinburgh, who was the lead author of this very insightful research: Caring for care: Online feedback in the context of public healthcare services (https://www.sciencedirect.com/science/article/abs/pii/S0277953621006122)

In this research, online feedback is defined as public and, in many cases, anonymous ‘conversation’ between service users and healthcare providers. Inherent in the term ‘conversation’ is that it is a two-way conversation.

Fadhila and her team found that these ‘conversations’ were thought of not merely as having the potential to bring about tangible improvements to healthcare, but as in themselves constituting an improvement in care. In effect, the research found that providing feedback online via these ‘conversations’ was not just about providing insights on ‘choice’ or ‘giving voice’ to patient concerns, which typically is how such feedback is framed.

Rather, the research found that the ‘conversations’ were in themselves an ‘enactment of care’ – for patients, their health organisations and even healthcare professionals.  That is, their feedback intentions went beyond themselves because going public meant that the audience and the benefits of their feedback was much broader. Therefore, the provision of online feedback can be understood as a form of care. Put another way, providing these ‘conversations’ online is about patients ‘caring for care’.

This finding is in contrast to how healthcare services often see feedback, which is as ‘data-collection’ rather than ‘connection’ with those giving the feedback.

This important research has significant benefits for healthcare organisations who encourage anonymous, public online feedback via simple and safe ‘conversational’ platforms such as Care Opinion. Such benefits are about enabling patients and their and loves ones to frame their feedback as ‘caring for care’ rather than just being treated as ‘data-sources’.