Carecircle: A social network for health

A good idea - but building a healthy community is hard work

It sounds like a great idea - a social network focused on health where the information is verified by scientists and users can be confident that the site will not be taken over by cranks and conspiracy theorists. But many have tried to take on the likes of Facebook and Twitter and failed dismally. Andrew Smith, the man behind Carecircle, knows just what a challenge he is facing:“You'd have to be kind of crazy to try, to be very honest. And we understood that from the beginning. Maybe it's a fool's errand, but we're going to give it a go.”

Mr Smith, who is is based in Switzerland, has had a career in technology consultancy but he told me it was his personal experience which convinced him that just searching out health information on general forums was not the right approach:

“I went through an illness a couple of years back, and I found myself on Facebook groups. If you go on to Google or Facebook, you're going to get misinformation.” he says, explaining that the business model of most social media sites prioritises content that is engaging rather than accurate: “You find confirmation bias in the sense that the algorithms are designed to drive engagement to make people buy things.”

So Carecircle, described as a “people-powered social network for healthcare to find help, hope and control” will not carry advertising. Instead, it will eventually look to monetise by allowing what Andrew Smith describes as “bonafide researchers” to get access to the data of those users who volunteer to share it. And in terms of content moderation he looks to Wikipedia for inspiration - just as the online encyclopedia has volunteer editors, the hope is that network members with a scientific background can be recruited to police the site.

But first of all comes the tricky part - building the network. I downloaded. the Carecircle app, signed up and had a look around. It was pretty quiet. You choose to join “rooms” reflecting your interests, and I joined several, including one of the busier ones, about Covid and Long Covid. Then I found that the most recent post was more than two weeks old. I was also disappointed to find there was not a room for Parkinson’s, which seemed strange when it is the world’s fastest growing neurological condition.

Now, to be fair these are very early days. Andrew tells me that a Parkinson’s room will open any moment now, and a big marketing campaign will soon be underway to let people know about the network’s existence. Perhaps more significantly, there are partnerships in the works with existing patients’ forums and health charities.

But Andrew knows that for the network to be useful - and for the network effect to work - it has to attract a very sizeable crowd. He points out that a few online health communities have attracted a couple of million users, then faded out: “That sounds like a lot of users, but if you actually then divvy that up by the disease interest groups, that's not enough engagement, you really need to be into the 10s of millions.”

If that does happen, then it will bring a new challenge as the network attracts users who perhaps do not share its founder’s view of what constitutes scientifically valid medical advice. What, for instance, will the moderators’ attitude be if someone tries to open a room dedicated to homeopathy?

But for now I am wishing Carecircle the best of luck because there has never been a time when accurate online health information and advice was so needed. I’ve seen how valuable it can be when people share their own experiences. I’ve been on the receiving end since I was diagnosed with Parkinson’s in 2019, meeting many wise and friendly ‘Parkies’ who can sometimes cut through the medical jargon and show you the way to better treatment. “You look a bit under-medicated,” one of my new friends said the other day, a view confirmed by my consultant who has just added a bit more Levdopa to my prescription.

Then as someone with long experience of quite a rare condition, a malignant ocular melanoma, I’ve been happy to pass on what I know. Ever since I made a video diary about undergoing Proton Beam Therapy on my eye, people facing the same procedure have contacted me to say they found it useful and to ask further questions.

So trying to build a community where health experience and advice can be shared in a safe and trustworthy environment is a noble aim. The chances of Carecircle succeeding are probably slim but I am wishing the team behind it all the best as they try to prove that , when it comes to advice about our health, we want something better.