As part of our series to recognise and highlight the impactful work of individuals and organisations in the non-profit sector, we recently sat down with Jon Eaton, Communications and Digital Engagement Director at Epilepsy Action.  

Jon shares with us a bit about his professional journey, along with the transformative projects that have been underway at Epilepsy Action. He shares how they went live with a new CRM in just 11 months, delving into the crucial elements to getting your team to embrace change. He also shares his perspective on whether there is a practical fit for AI in the charity sector right now.  


Could you please introduce yourself? How did you get into your role and what attracted you to Epilepsy Action?

Hi, I’m Jon Eaton from Epilepsy Action, Communications and Digital Engagement Director and I’ve been here for four years.

My background prior to working for Epilepsy Action was entirely in marketing agencies. I had already worked in the health space, doing a couple of projects with the NHS. I had also completed a project with a very large care home that had lots of interest in understanding the science and real-life experiences of people with conditions like dementia. So, when the Epilepsy Action job came along, at the time it was directed to digital, it was interesting to me to go and work on something full time as opposed to as an agency worker.  


Could you share a bit more about Epilepsy Action and some of the recent things you have been working on?

Epilepsy Action is a national charity and we’re here for everybody affected by epilepsy at every stage in their journey from pre-diagnosis, through to living well and hopefully fulfilling lives with the condition. 

Four years ago, we were just about to go into lockdown which, as for many charities, was traumatic, as we were reliant on face-to-face activity. At the time, there wasn’t a huge amount of digital maturity for us to take inspiration from within the broader charity sector and we had, like a lot of other charities, fairly old systems. We had an old website and CRM that we couldn’t change. However, all of our service users were requesting that we stay in contact with them during the time when social distancing was in force. For the first year we did whatever we could to try and keep people talking to each other. We bolted different systems together and tried lots of initiatives on social media and on our website. That kept people talking however, it wasn’t until 2021/22 that we started to really look at what we had.  

We did a big project to better understand our audiences and were able to take the total number of potential audiences down from 113 to just 5 core segments. We also looked at our CRM replacement project as it had not been delivering for quite some time, and people had started to disengage from it. To resolve this, we carried out a project with Hart Square to understand why things had gone wrong. We then went through an exercise to find a new supplier and set up a completely new project team. Having not gone live for five years and spent a lot of money not really getting anywhere, we went live in 11 months. It was a crash landing, but it was it was good for us to make progress that quickly. That’s been our story. 

This year we are carrying out a brand project and we are starting to really understand our place in the market. 

What are the biggest challenges you have experienced when bringing people along with you on a change project? And what advice would you give to organisations about to embark on a project?

The most useful change model that I’ve used is RACI, which stands for Responsible, Accountable, Consulted and Informed. In my opinion, you need to make sure you’ve got all the influential people mapped out in the process. If you don’t give them a role, you don’t make them either responsible or accountable and so they may begin to undermine the project from the sidelines.   

In terms of change more generally, in organisational wide projects, one of the things people often get concerned about is that you have to move as slow as the slowest person, and make sure that absolutely everybody’s on the bus before you move to the next stop. That’s not the case. It is sometimes messy and if you look at most organisations pre and post big implementations, roles often change quite dramatically. Therefore, to try and base your entire project around existing roles, is often the wrong way to go around it.  

For example, when you look at user experience theory within digital projects, one of the things that gets mentioned a lot is the three different kinds of requirements. These are user requirements, commercial requirements and people requirements on your end. The user requirements and the end service user requirements are the most important thing. What you often see is that if you don’t have enough rigour around your requirement capturing and stakeholder management, you end up getting to places of panic in the project because nobody’s really engaged in it. This then leads to you trying to pacify these internal stakeholders by delivering the requirements they want above what your service users really need. This makes the project all about making people’s jobs easier and not as much about delivering benefits to your beneficiaries. 

Are there any upcoming or recent technologies that you think will change or disrupt the sector and how?

At the moment everyone is talking about AI, in particular generative AI, because it is potentially quite a game changer for charities. In particular, in relation to generating new content and establishing the feasibility of different initiatives you are trying to deliver. 

Having said that, I do think that the digital industry in general is often obsessed about what’s new. For example, 10-15 years ago, I was very heavily involved in website personalisation projects and at that time it was new and exciting. However, if you talk to most charities now, they haven’t got an optimisation or online personalisation specialist working for them. Many of them do not use the technology, even though they recognise it’s potentially a powerful thing that could be useful.

In my view, if you really wanted to do something genuinely game changing for your charity right now, rather than spending loads of money on tack, do an audit of your people. Find out the things that people would like to do more of and encourage them to do that. The challenge with AI right now, is that it requires people to make the best of it and if those people don’t exist yet, then spending lots of money on it is probably not the right thing to do. 

Do you have a piece of work or an activity that your organisation has carried out that you are particularly proud of?

I think the CRM implementation project we did with Hart Square.

A lot of the conversations here, at cultural level up, until the past six months or so have focused very much on: 

  • things we couldn’t do  
  • that the old technology set was impossible to change  
  • on things that we would do later because the technology was going to be coming online later 

The project we’ve done with Hart Square has started to change that.  

We have more people who are not constrained in their thinking by the technology platforms that they believe to be limiting. We see more people being braver and bolder and that enabled us to work with the strategy for 2024 to 2030, which is much more ambitious than previous years.  

It is infinitely more ambitious that we’re going to try and create a world without limits for people with epilepsy because we feel we can. We’ve not got to spend the next six years building new websites and CRMs. We’ve done it. It’s now about iterating on those platforms and generating the data that we need, and the money that we need to build a world without limits for people with epilepsy.