Content design and health information

In a webinar hosted by the Patient Information Forum, Nia shared her experiences of both designing and receiving patient information. Here she reflects on how content design can help health organisations deliver relevant, useful information that meets their users’ needs. 

One of the most overwhelming things about being diagnosed with a chronic or life-threatening condition is the amount of information you get. Either too much to be useful, or too little to address your worries. 

I should know: I was diagnosed with breast cancer at the age of 32. 

It was a real privilege to be able to share my story with the Patient Information Forum and their members. As someone who's been both the designer and consumer of patient information, it was a great opportunity to show why content design matters.

At a time when friends had mortgage advisors, wedding planners and midwives, I had an oncologist, breast nurse and surgeon. 

I was told in the run-up to my diagnosis that I was “too young” and that it was “probably nothing serious”. I was not a typical breast cancer patient. 

And from the earth-shattering moment I was told I had cancer, I quickly realised that I was not the intended audience for a lot of breast cancer information. There’s no one-size-fits-all, because every patient has unique circumstances.

The case against “just in case” content

Content design teaches us how to put people at the centre of the information we design. We start by understanding their needs, their questions, their concerns, and use these as the foundation of our content.

And this is great, in theory.

But what happens in the real world when a GP has just 10 minutes to talk someone through a life-changing diagnosis? 

In my experience, you’re handed booklets and pamphlets, and told which websites to look at. While this was well-intentioned, it left me feeling overwhelmed and uncertain about which information was relevant to my situation. 

In the first appointment, I got information about survival rates, having eggs and embryos frozen, and something called “shared decision-making”. But what I needed was:

  • reassurance I wasn’t about to die,
  • advice on telling my mum who was living with terminal breast cancer,
  • and to know if I could still go on holiday that same day.

(Cancer does not care about your plans.)

During 9 months of treatment, I received:

  • 32 booklets,
  • 10 pamphlets,
  • 45 pages of printouts from websites,
  • 25 letters,
  • 17 random bits and bobs.

This is a lot of reading, to say the least. And how much of it was relevant? 

Content provided “just in case” makes it the patient’s job to sift through and find information that might be relevant to them.

How content design fixes this

Content design is about giving people the right information, at the right time, in the best way for them to consume it. 

It’s about not overwhelming someone with information just in case it’s useful at another time, but giving them what they need in that moment.

To be able to do this, we have to understand the journey someone is on, the things that matter most to them, and the questions or concerns they have.

Content design is a mindset and framework that always starts with research to understand:

  • how people consume and process information,
  • their thought process and how they make decisions,
  • their beliefs and attitudes; their mental models of how the world works, 
  • how they find, do and get things.

It’s a cyclical process where we continue to research, design, test and iterate content, because people’s needs will inevitably change.

Content design in action at health organisations

The Patient Information Forum supports health charities to achieve the PIF TICK. It’s an independently-assessed quality mark for trusted health information, and the criteria are closely aligned with the principles of content design.

This was their first webinar in content design. The highlight for me was hearing from the other speakers about how they introduced content design to their organisations:

  • Tom Bishop, Head of Information at charity Anthony Nolan, 
  • Steph Jury, Health Content Manager at Guy's and St Thomas' NHS Foundation Trust.

Finding gaps in information

Tom explained how his team ran a discovery before designing new patient information about transplants for people with sickle cell. 

What I really liked about [content design] from the start is the idea that you're not encouraged to produce more content, but smarter content.

“We found there wasn't a lot of information out there for sickle cell patients at all, let alone about stem cell transplants. In the early discovery phase, our writer and researcher Louis was saying, ‘there's clearly an information need, so let's try and understand what that need is.’”

To understand the gaps in information and develop a series of job stories to inform their new content, Tom's team consulted patients, healthcare professionals, and 2 related charities. 

“Going through this discovery phase before you write a single word really helps to clarify where the information need is and helps to prioritise how you can go about meeting that need.”

Meeting the needs of patients

Steph then spoke about introducing content design at the Trust.

“Content design is answering a user's needs in the best possible way for a user to consume it. So our take on that is that content design is not about achieving one type of output, it's about adapting how we create information to best meet the needs of our audience.”

Steph explained how this meant changing the culture at the Trust. In traditional publishing people work in silos on their “part” of the content, while content design means working together with people from many different disciplines. 

Moving away from a culture of individual ownership of work can be difficult, but to get the best results, it's really important to bring in new, different and diverse perspectives.

There's no one-size-fits-all approach to designing health information. But content design can help us put patients at the heart of the process so that we understand and meet their needs. 

Are you using content design at your health organisation? We’d love to hear about your experiences — email

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