Close up of two hands. One is holding the hand of a patient in a hospital bed for support.

Living with RA

Context

Rheumatoid Arthritis is an invisible condition that causes joint pain and inflammation. It’s a chronic autoimmune disease and people with RA are often on drugs to limit the progression of the disease for much of their life. It’s a long-term condition and can have a lasting impact on both mental and physical health.

See NHS information on RA
CDL (Content Design London) logo

This project was researched and completed during a 2-day Content Design course with CDL (Content Design London).

My role

As the sole content designer for this study project I followed these steps:

  1. Completed desk-based research
  2. Gathered language insights
  3. Constructed a user journey and user stories
  4. Organized content into clear sections and defined content hierarchy
  5. Wrote copy for the whole page with a focus on clarity and plain English
  6. Tested the content for readability and against user stories

Challenge

Write a comprehensive and factual web page for a UK-based ‘Living with RA’ website, addressing the concerns of women who have Rheumatoid Arthritis and want to start a family.


Research

Desk-based research

We were given a short amount of time (just 30 minutes!) to complete desk-based research into our chosen subject. Time was spent beforehand talking about various tools that could help, the first of which was as simple as… Google!

The Google search engine values:

  • relevant content
  • popular content
  • authority

So, it seemed like a good place to start.

Google’s ‘people also ask’ section provided valuable insight. It shows clearly the questions people are asking and, in this case, highlighted some concerns they typically have. High on the list were concerns about a greater risk in pregnancy.

People also ask: Will RA affect pregnancy? Does RA cause high-risk pregnancy? What helps RA whilst pregnant?

The related searches section showed many of the same concerns, as well as signposting where people went for information. This included forums, blogs as well as NHS and guidelines.

Google related searches. Key words highlighted are High-risk, NHS, Guidelines, Forum and Blog.

Terminology

I then considered the language commonly used when talking about Rheumatoid Arthritis online. My research into the disease raised questions about the suitability of the word ‘arthritis’. It seemed many preferred the term ‘Rheumatoid Disease’. Debate raged in healthcare forums, with posters saying they felt dismissed by friends and family that didn’t understand the impact the disease had on their life. Many regard it as ‘a few aches and pains’ and ‘an old person issue’, confusing it with Osteoarthritis. I tested which term was most used and recognised, in order to improve the reach of the article.

A quick look at Google trends made it very clear that the term Rheumatoid Arthritis is used far more commonly than Rheumatoid Disease. This was backed up by the difference in search results for both terms. Rheumatoid Disease and pregnancy delivered 34,900,000 results, compared to 53,600,000 for Rheumatoid Arthritis.

Google search results. 34,900,000 results for Rheumatoid Disease and pregnancy.
Google search results. 53,600,000 results for Rheumatoid Arthritis and pregnancy.
Line graph showing search interest relative to the highest point on the chart for the given region and time. A high volume of searches for Rheumatoid Arthritis is shown (between 50 and 100) and minimal searches for Rheumatoid Disease (fewer than 10 over time).

Looking at the language

I used healthcare forums (My RA Team and HealthUnlocked) to examine the tone and vocabulary used in this space. They clearly illustrated the many acronyms and abbreviations often used. Some were related to drug treatments (MTX, DMARDS, Meds) and some to co-occurring issues or similar conditions (MI, RSI).

Forum posts clearly showed the depth of feeling on this subject. The language used was highly emotive. So much fear. Fear of miscarriage, fear of pain and repeating history, passing the disease on to their children. I gained a clearer view of the concerns and the state of mind of these women. They may well be distressed, definitely concerned and wanting definite answers.

Recurring forum questions were:

  • Will my disease or medication affect my baby’s development?
  • Will my symptoms worsen during pregnancy?
  • Will arthritis affect my delivery?

Another common complaint was not feeling heard by professionals, or given enough time to fully discuss concerns.

Forum posts clearly showed the depth of feeling on this subject. The language used was highly emotive. So much fear.

Fear and misinformation

Next, I reviewed keyword suggestions provided by the Moz SEO keyword explorer. As expected, many of these suggestions were highly emotive and related to the fears that future parents would have. There was also some misinformation and misunderstanding about the possible dangers, which are important to address.

Some examples were:

  • rheumatoid arthritis pregnancy complications
  • rheumatoid arthritis during pregnancy symptoms
  • rheumatoid arthritis treatment in pregnancy
  • will rheumatoid arthritis affect pregnancy?
  • does rheumatoid arthritis cause high-risk pregnancy?
  • what helps rheumatoid arthritis while pregnant?
  • rheumatoid arthritis and pregnancy medication
  • can people with rheumatoid arthritis have children?
  • why does rheumatoid arthritis cause stillbirth?
  • is it safe to get pregnant with rheumatoid arthritis?
  • is it hard to get pregnant with rheumatoid arthritis?

It was clear that answering these questions, and correcting the misinformation, was a priority.


User journey

Using post-it notes, I created a quick user journey. This helped me to piece together, and better understand, the end-to-end journey taken by the user. People they’ve had contact with in-person (busy Rheumatologist, consultant, midwife etc) at each stage, and any follow-up questions they may have.

Considering the volume of information and questions, and changing concerns of the user throughout the journey, I chose to split the information into clear sections based on the user, and pregnancy journey. Avoiding information overload on one page.

We’re all only human and naturally concerned with what’s coming up next. Always looking to the future, particularly when there is fear involved. With that in mind, I chose to focus my article on those planning and hoping to start a family. As that’s what the majority of search results and forum posts were concerning.

Section of a user journey: colourful post-its on a table.

Job stories and acceptance criteria

Now that the focus of the article had been narrowed down to the early ‘pregnancy planning’ stage, job stories were created based on common concerns discovered through the research.

Job story: When I am thinking of starting a family, I want to find out what impact my RA may have on a future pregnancy, so that I can plan ahead. This story is done when I understand how the disease could affect a pregnancy.
Job story: When I am considering starting a family, I want to find out if my RA drugs are safe for pregnancy, so that I can talk to a professional and change them if I need/want to. This story is done when I know what RA drugs are safe to take in pregnancy.
Job story: When I am thinking about having children, I want to know if my disease is hereditary, so that I can make an informed decision. This story is done when I understand if the disease could affect my future children.

Writing

Using job stories enabled me to focus my writing where I felt it would be most useful. They provided structure and a sort of checklist so that I knew I’d covered what was necessary.

I found the language discovery really valuable. It helped me to consider the tone, style and structure of the article, being sure to explain abbreviations as necessary.

The section detailing common RA drugs and their suitability for pregnancy includes icons to help readers to get information quickly. These icons are colour coded, but the use of icons and colour together should improve accessibility for people with limited vision or colour vision deficiency.

Read the article on Google docs

At a highly emotional time, providing clear information in a format that’s easy to read is so important.

Result

The article was researched and written by myself and is fundamentally a learning project. It won’t be published online. Because of that, I don’t have metrics or data for comparison or to prove ROI.

What I can say with confidence is:

  • the structure of the article is clear and addresses user concerns at the time they need it
  • it answers common questions that women with RA have
  • the content is clear, readable and written in plain English

This project helped me to understand the content design process, and the steps you can take to improve your content, making it more human-centred.

The purpose of the article is to be informative, rather than conversational. It’s clear and factually accurate, with a view to avoiding misinformation and scaremongering. At a highly emotional time, providing clear information in a format that’s easy to read is so important.

Comparing my article with one on the same subject from NRAS (National Rheumatoid Arthritis Society) using Hemingway App, I was pleased to see that it scored highly with a grade 8 for readability. Although that’s not a direct comparison, it was a pleasing result.

Screengrab of Hemingway readability app showing grade 8 readability for my article, compared to grade 12 for the published NRAS article..

What would I do differently?

Despite my best research efforts, I was working alone on this and the article is the result of my work only. I have no doubt it could be improved with input from a subject-matter expert.

Note. This was originally written in January 2020, before the launch of the Versus Arthritis rebrand and their powerful TV ads, which aired in October 2020. They would be considered the experts in this subject at the point of writing this case study, meaning my article may not even be needed.

Photo by Jon Tyson on Unsplash


School workbook with icons of fire, bombs, punching fist and exclamation marks

Cody

Context

This study project is the result of an online course that began by examining the history of feminism, right up to today. I learned about the intersection of feminism and technology from influential figures like Josie Young, Alexander Fefegha, Caroline Sinders and Feminist Internet.

UAL (University of the Arts, London) logo
Futurelearn logo

This project was researched and designed as part of a Futurelearn course by the UAL Creative Computing Institute called ‘Design a Feminist Chatbot’.

My role

As the conversation designer for this study project I followed these steps:

  1. Completed user interviews
  2. Created a storyboard to get more insight into the contexts of use
  3. Considered design and representation in the context of the user using Google’s Conversation Design Process
  4. Mapped conversation flows using Whimsical
  5. Coded the scripted bot using Glitch

Challenge

Create a conversational design flow for a scripted chatbot. Meeting the needs of an underrepresented group of people within society.


Process

Feminist Internet studies

As part of the course I learned:

  • About the different types of chatbots (scripted or AI) and the impact of bias in their design.
  • How many ‘helper’ bots (Alexa, Siri) are gendered as women – perpetuating the stereotype of women as carers and, in some ways, as subservient.
  • Ways that bias in the design process can amplify harmful effects of stereotypes and serve them back to us.
  • The value of research. Discovering the actual, rather than perceived, needs of the people we are designing for.
  • The importance of diversity within a design team.


Users as stakeholders

The course questioned the term ‘users’. Not the first time I had encountered this and I tend to use ‘people’ and ‘users’ fairly interchangeably. It was suggested that we use the term ‘stakeholders’ instead, encouraging us to think of them as ‘having a significant input (stake) in the project’. Using the stakeholder generator tool, I chose to create a scripted bot that would help children reduce anxiety.


Stakeholder research

Simple (and limited) stakeholder research was completed with my son and a couple of his friends. Being at the younger end of the stakeholder group (age 5 and 6) their responses were short, but helpful. They did get bored rather quickly!

The tool prompted me to carefully consider any barriers of use for my stakeholder group. The most obvious is reading ability. There’s a big difference in the reading ability of a six-year-old compared to a child of ten, but either way, the language used by the bot should focus on being clear and conversational.

Stakeholder research page. Specifying the users (stakeholders) for this bot.
Stakeholder research page. Specifying the users, or stakeholders for this bot.

I felt it was important to consider the kinds of things children might worry about. What might cause them anxiety? My son and his peers live a mostly privileged life. Many children do not. They may worry about whether they will eat that day, or be affected by bullying or abuse. They could have caring obligations, be in fragile or abusive domestic situations, deal with financial hardship or any number of other concerns.

Stakeholder research page with brainstorm
Stakeholder research page with brainstorm ideas.

A bot like this may not work for all children, it may even be inaccessible to some. But it has the potential to introduce them to the idea of taking a pause and encourage self-reflection. Stopping and noticing how they feel, rather than simply reacting to those feelings. If Cody only achieved that, it could be beneficial.


Context of use

At this stage, I created a simple storyboard. It helped to think about where they might be, the frame of mind of a stakeholder at each stage in the process and what triggers them to use the bot in the first place.

Storyboard setting the scene (Amy has a hard day at school, sensory overload, struggling to keep up with work and peers) followed by triggers for use of the app (Amy struggling with noise and work at school) which her mum downloads. Then the interaction phase. Amy finds the bot is friendly and colourful, she learns ways to deal with the noise and peers in school. And finally, change. Amy is doing better at school, and coping better generally.
Storyboard setting the scene (Amy has a hard day at school, sensory overload, struggling to keep up with work and peers) followed by triggers for use of the app (Amy struggling with noise and work at school) which her mum downloads. Then the interaction phase. Amy finds the bot is friendly and colourful, she learns ways to deal with the noise and peers in school. And finally, change. Amy is doing better at school, and coping better generally.

Design and representation

The next step was to consider the chatbot representation and its personality. I used Google’s Conversation Design Process, with prompts from the Feminist Design Tool.

A brainstorm of adjectives came next, focussed on the qualities I wanted the chatbot to embody. That list was then narrowed down to 5 core personality traits.

Stakeholders (users) could be in an escalated state, so it’s important that the bot personality is calm and non-threatening. That it can understand and empathise, in order to be able to help.

The next brainstorm was to discover characters who might embody these qualities. Not necessarily a person, could be an animal, a robot or even an alien! We were prompted to be aware of perpetuating stereotypes through the use of gender. I chose a rabbit as my character. The very definition of a non-threatening animal, a rabbit is soft and gentle.

Adjectives to describe the bot, and characters who embody those qualities.
Brainstorm of adjectives to describe the bot, and characters who embody those qualities.
A description of the chatbot, and some visual references. Animated gifs of robots, and stylised rabbits.
A description of the chatbot, and visual references.

Conversation design

Considering how to talk to children in that age group, particularly about things they’re reluctant to think or talk about, was really important.

Language points to consider:

  • Using words like ‘help’ and ‘worries’ might put kids off… try talking about what’s ‘on your mind’ or ‘bothering you’ instead.
  • Getting the balance of information, conversation and fun.
  • Need to convey that the bot understands how they feel (within the limits of what a bot can do).
  • I felt it was important to introduce the children to techniques, activities and info. Not push it.

I then mapped out the scripted conversation flow using Whimsical.

Screenshot of conversation flow in Whimsical

I felt it was important to introduce the children to techniques, activities and info.
 Not push it.

Alpha version

Working through this process step-by-step ensured that (despite having a very limited research group) I was considering the stakeholder’s needs and limitations at every point.

Because of this, I made the decision that the bot should introduce kids to the organisation Childline and resources available to them through their website and counselling services (chat online or call). Also that a final version of the bot should have a read-aloud function in order to be more accessible to that age group.

I chose the name Cody for this particular chatbot. It’s a non-gendered name meaning ‘Helper’. It’s also a (rather obvious) pun on coding, which appealed to me.

Cody should:

  • Introduce kids to Childline and resources available to them through their website and counselling services (chat online or call).
  • Provide them with simple mindfulness techniques to help them to manage their worries.
  • Provide information and fun, alongside the techniques. It’s a fine balance!
  • Have read-aloud functionality.

Screenshot of conversation where Cody asks to be your friend and how you would like to be addressed.
Introduction conversation where Cody asks to be your friend and asks how you would like to be addressed.

Once the conversation flow was complete I worked on creating it using Glitch, remixing the F’xa bot by Feminist Internet.

Screenshot of the chatbot introduction, this time it's a split screen showing the code on the right hand side, and the chatbot on the left. The code shows what the bot says at each point, and the human response options. The introduction text reads 'Hey! My name is Cody. I'd like to be your friend. What would you like me to call you?'
Code and conversation shown in Glitch
View the alpha version on Glitch

Result

Considering this was a short project with a very limited research group, I’m proud of the end result as an alpha version. I believe it has potential as a way of introducing de-escalation and mindfulness techniques to children. And offering support to those who need it.

Given the huge variation in each child’s lived experience, and developmental changes that happen between the ages of 5-10, it would never be a product that could work for all children. People have all different kinds of worries. The scale of these worries may vary depending on the gender, race, family situation and socio-economic circumstances of each child, and those with *serious or safety concerns should be properly signposted to contact Childline.

*serious of course from the point of view of an adult lens. All worries are valid and serious to the child.

The scale of these worries may vary depending on the gender, race, family situation and socio-economic circumstances of each child.

Reflections

I found the course, and the process of chatbot design fascinating. To progress this project I would complete interviews with a far greater number of participants, from a more diverse research population. It would need a greater range of ages, more racial diversity and to be split across socio-economic groups. The only way to get a better view of the user (stakeholder) needs would be with comprehensive research. At this point it would be ready for another iteration, or user testing.

Photo by Mika Baumeister on Unsplash

Animations used for Cody by Jonathan Dahl, Nhut Nguyen, Formas Studio and Bender from Futurama by Matt Groening.