OPINION17 January 2019

Mining social media for patient research

Healthcare Opinion UK

The online world has become a place where patients can feel part of a wider support community and less isolated and patient research must recognise the digital patient journey.


In the first part of this series we discussed Spoons theory, a tool originally developed by Cristina Miserandino, a Lupus patient in 2003. While Christina explained to a friend that the difference between being sick and being healthy is having to make choices, she used an analogy of spoons – allocating a certain number to a given activity.

With the advent of social media we can see how patients have taken ownership of the Spoons theory and made it into something that relates to them. In early 2018 #spoonie came up as an organic search term on Instagram.

Further investigation reveals a powerful network of chronic fatigue sufferers sharing their stories, inspiration and advice. Social media and #spoonie, gives sufferers a cohesive identity and a community across the globe. What was once a theory shared via word of mouth has evolved and spread like wildfire as an effective support tool worldwide, helping more patients practically manage their condition than could have ever been imagined by Cristina.

Influencers and patient-led support groups

Patients or community groups that have significant reach in these rare conditions are easily identified. Take for instance Salty Cysters, two sisters with Cystic Fibrosis who share their experiences, highs and lows, post pictures of themselves to neutralise the stigma around the condition, with the aim of connecting with many other sufferers.

TheUnchargeables is another influencer group of sufferers who have come together to provide support and advice, encouraging other sufferers to be open and transparent about their condition. They even have their own merchandise.

An opportunity to learn and intervene

When patients engage with a wider network via social media, it can have a significant impact on both treatment perspectives and personal mindset.

From a cognitive behavioural bias standpoint, this kind of interaction can lead to changes in self-efficacy perceptions – that is, developing a belief through proxy that a treatment is right for them because they have read other patient cases/experiences and can see what that will mean for them.

It also offers incentives to improve their situation (patients can read these positive support stories and it can act as an incentive to seek out that support/treatment themselves). 

When pharmaceutical companies look to invest in patient support programmes, it is important that they are relevant and meaningful to patients, building on the networks they are already tapping into online.

The specifics of these interventions, however, need to be carefully considered and draw closely on gaps in the support networks or areas of great need. This insight can be captured through close and systematic social listening as well as digital cultural analysis supported by deep qualitative insight.

Patient research by nature is highly complex. The online world is now deeply embedded in the patient disease and support experience. As such, research in this arena must have a broader lens to explore this wider, yet critical element of the ecosystem to drive improved patient experience and treatment outcomes. 

By Dinisha Cherodian and Dr Pamela Walker, Incite