Guest blog: Learnings from a ‘viral’ Facebook post

By Lottie Storey

It’s often said that people don’t like change, and this is something that I have seen first-hand. Though a name change of a rare medical condition may be necessary, it can cause fear in people who have the condition, especially if they have already done so much work advocating for themselves with the previous name. 

The rare condition in question had the name diabetes insipidus, a name that was often confused with diabetes mellitus.

Diabetes insipidus is not related to diabetes mellitus at all, other than that historically they were both tested by tasting the patient's urine! People with diabetes mellitus often have sweet urine, whereas in those with diabetes insipidus it was salty.

Diabetes insipidus occurs when there are problems with the hormone vasopressin, which regulates the amount of fluid in the body. The main symptoms are excessive thirst and frequent weeing. This condition is easy to regulate with the right medication. 

The name change

I work for The Pituitary Foundation, the charity that support people with rare pituitary. Unfortunately, we had heard many stories from people who were refused necessary medication as healthcare professionals confused their condition with diabetes mellitus.

This led to the death of 22-year-old Kane Gorny who died of dehydration after going in for a routine hip operation. The result of this tragedy was a large-scale campaign to change the name of the diabetes inspidus. A working group was put together and considered a series of names but settled on Arginine Vasopressin Deficiency, which abbreviates to AVP-D. 

Communicating the change

This is where I came in. As the Communications Officer at The Pituitary Foundation, I needed to ensure that this change was communicated to our audience.

The starting point was a blog and social media posts, both communicated the name change and the blog explained a bit more about what the new name meant.

As a small charity, with just over 10,000 Facebook followers we don’t expect our social posts to get that much engagement. But understandably this post was an exception: with 623 comments, 1254 reactions and it’s been seen over 50,000 times! About 50% of the comments were positive, with people praising the name change. But as with any change there were a lot of questions.

If we were a larger comms team with more resources, we may have been able to do some initial  user research to pre-empt these questions, so that we could answer them in the initial blog post. As a solo, part time communications officer, I didn’t consider that this would be necessary or have the capacity to do this. 

Using social media as a research tool

However, we were able to use these comments and questions from the social posts to inform further comms.

The many social media comments worked as an ‘on-the-fly’ method of user testing.

 Going through all the comments I realised that they covered the same five questions:

1.       How is it pronounced?

2.       Is this a worldwide change?

3.       Have the World Health Organisation (WHO) agreed this?

4.       How will medical professionals be told about this new name?

5.       Will my endocrinologist know?

I used this knowledge to inform future comms around this topic. This includes a live Q&A session with an endocrinologist who was part of the name change and a short video on the pronunciation of Arginine Vasopressin Deficiency.

What next?

As an early career comms professional, I learnt a lot from this experience. In the future I will do initial consultation with those living with a medical condition to understand their concerns around any changes.

I’ll also remember what a great tool social media can be for learning about your audience, especially if there isn't enough resource to do more in-depth user research.