It is not entirely uncommon for consumer- packaged goods companies or luxury retailers to pay Facebook, YouTube or Instagram ‘stars’ to endorse and use their brands. Typically, this individual has the profile of a customer that the manufacturer or retailer wishes to target, with one mandatory characteristic: tens of thousands (if not more) of followers on social media.

In healthcare, this trend has started to gain significant traction over the last few years. These individuals – patient influencers as they are known – are becoming more and more ubiquitous. Most of the mainstream information on the role of patient influencers focuses on the inherent conflicts of interest, whether this activity transgresses the tight rules around direct-to-consumer advertising and, pragmatically, where we can find such people. Rarely do we discuss the policy/public health and behavioural implications of this growing trend.

In truth, we have known about influencers for years. Malcolm Gladwell described them in his landmark book, The Tipping Point: How Little Things Can Make a Big Difference, published in 2000. Gladwell introduced us to ‘connectors’ and ‘mavens’. Connectors are, well, in the habit of connecting people. However, it is not only the simple act of connecting that is of importance but, as Gladwell states, the sheer number of connections that these individuals can bring together. Mavens, in contrast, are not about people and connections. Mavens share knowledge and spread information. So, in essence, patient influencers are part connector and part maven, which is what makes them incredibly valuable to the pharmaceutical companies that are now paying such influencers to share their experiences about products and raise awareness about disease states.

But there is one other factor that makes these influencers incredibly persuasive and valuable beyond the fact that they know a lot of people and are good at sharing information: they look like us. If not physically, then emotionally and experientially. The academic literature has reinforced what we already knew intuitively, which is that we feel more closely aligned to people who are similar to us and that, more likely than not, we are predisposed to find such people credible.

It is this hallmark of having ‘walked a mile in your shoes’ that draws us to these patient influencers. They know what we are feeling, what we have gone through and what is around the corner. They are connectors and mavens. But they are also part prophet and part therapist.

So, with this backdrop as our foundation, what about the policy and/or public health implications of this trend? Well, let’s look at two aspects of this. Firstly, the ability of patient influencers to aggregate the opinions and experiences of patients and potential patients is tantalising. We may soon have incredibly rich insights into traditional ‘black box’ topics as a result of these patient influencers and their networks. Imagine being able to better understand if ‘redness on the skin’ is an injection site reaction, described in (almost) real time. Or being able to ascertain patient compliance to therapy. Or comprehend the packaging and design of your pill bottle or blister pack. While there are challenges with such ‘social listening’ platforms, such as the inability to distinguish between ambiguous or ill-defined terminology, the artificial intelligence and deep learning algorithms being developed may soon get us there.

The second insight from this growing trend of using patient influencers is that we may drive unnecessary healthcare utilisation. One of the best public databases in the US for looking at the online habits of patients, the Health Information and National Trends Survey (HINTS), demonstrates that people are increasingly using the internet to seek health information and that they are increasingly comfortable with it as their first option for potential answers. In other words, for those who are undiagnosed, we may be driving people to their primary care providers needlessly, seeking diagnosis of symptoms. And for those who are already diagnosed, we may be driving these patients to seek more expensive treatment options as they see patient influencers with their same illness using treatment modalities that provide high quality of life and wonder ‘what about me?’

Barring a major regulatory or legal barrier, it seems reasonable to believe that patient influencers are here to stay. While sharing disease and product information, connecting patients with each other and generally providing an avenue for patients to not feel alone are all incredibly important features of this growing trend, perhaps its best application will be to demonstrate impactful public health and policy implications.

Patient Influencers are becoming ubiquitous. Should we care?

This article was originally published here.