What having cancer taught me about content and SEO

I’ve worked for many years in the field of user experience. It has become a habit to approach things in my life as a participant and an observer. The experience of a cancer diagnosis is no different. However, unlike when I book travel or research hobbies, the impact this experience has had on me has been very profound.

For those of you working for a medical organisation or charity, I would love to encourage you to review your content with my points in mind. I hope that my personal experiences can help you approach optimising keywords and content strategy to best meet your specific audience’s needs. It feels a bit strange to write about this, but I believe it's something that needs to be talked about.

One final point before I dig into my story. Consulting with real people as part of a proper research process will always be best. However, in this setting, that type of research is very tricky to run. The ethical considerations make research either challenging or prohibitive, especially accessing patients pre-diagnosis or during diagnosis. A sensitive research strategy undertaken with some service design that looks at both the on and offline experience, combined with an SEO review is going to be the most effective way to approach the challenge.

My story

I’ve run a lot of user research in my career and I’m tuned to ask open-ended questions, which I ask myself frequently. I use these to prompt my own reflection on things, just like how I’d use them in research sessions with participants. Things like “how does that make you feel?” “what can you do here?” and “what are you looking for?”.

As well as acknowledging my experiences, I recorded my pre-surgery journey. This was so I did not forget the phases I went through leading up to the operation to remove my colon. I realised that my mind was all over the place and likely to forget details. Being the diagram enthusiast I am, I created a Miro board to log what I was going through to refer back to.

What I am sharing here is very much my personal experience and has not been synthesised with others. It's not a guide or any sort of best practice. It is more of a starting point to consider approaching search optimisation and content strategy for humans in acute stress, anxiety and states of illness.

A mind bending journey, on and off Google

During the timeline between pre-diagnosis, diagnosis, waiting for surgery, post surgery recovery, and onwards, my use of the internet and digital information varied hugely, as did my ability to interpret what I read.

I’ve made a graph that plots my anxiety levels over time, to illustrate the emotional rollercoaster. At the peak points of high anxiety, it significantly impacted my concentration and cognitive processing abilities. I struggled to take in information, and distinguish between reliable sources and unreliable ones.

At points this made me vulnerable as I read unhelpful opinion pieces, or factually incorrect articles that I would normally have disregarded, or not even clicked on. I ended up on US sites all too frequently too, causing me confusion as I compared them to UK ones. This is a common problem for people searching for healthcare information in the UK as US sites often dominate results for symptom and treatment based searches. This places extra pressure on the individual to sift through results to find what is actually relevant to them. During my peak stress moments, I didn’t always have the capacity to do this. UK organisations can compete with US ones, but they have to ensure their content is properly optimised for Google search: demonstrating expertise, authoritativeness and trustworthiness (E-A-T).

I came to read these for two main reasons, firstly because in some cases I exhausted the reputable sources of information, or they gave me no onward journey to pursue with them, so I returned to the search engine results page (SERP). There were points like this when I had an insatiable appetite for information and I would follow worries around the internet with lots of “what if..?” thoughts.

Secondly, because sometimes these sites performed better for the search terms I was using so came up ahead of more reliable sources. Pre-diagnosis I was great at sorting useful and non-useful sources, but that skill diminished during my peak anxiety periods.

Sometimes organisations choose specific terms to use and avoid, and this causes problems for people like me when we don’t know what those rules are, and we’re using the language that we know and understand. Ultimately, is it better for someone like me to find your content, or not find it at all?

Abandoning search

There were points in this journey where I abandoned using search engines altogether. These points came for a few different reasons. Following my initial diagnosis and frantic searching I had a period of being unwilling to engage with content about my condition or treatment (probably due to exhaustion from worrying about it). Later on I was given a printed book about colon cancer from the fabulous Macmillian colorectal nurses that guided me through diagnosis, which was so well written, it actively helped calm me and kept me off less helpful online searches. The content was easy to understand and frictionless to read. It never made me have to go away and look up a term, or feel stupid for not understanding.

I also found that there were some things I couldn’t bring myself to search for too, because it made my situation too real. Before having surgery I was told I would probably have to have a stoma, and it wasn’t clear if I had one if it would be temporary or permanent. I found this really challenging for several weeks, and was unable to look up information about it. I did not know anything about them aside from feeling horrified as they are such a taboo subject.

However, this block was broken when I discovered (by accident) the stoma community on Instagram, and the fear and stigma I’d felt about having an ileostomy (a stoma made from the small intestine) reduced after following several people who were open about their experiences. Instagram has been my primary source of stoma-related information, and the accounts that have been the most useful are from people not organisations. Their content is reassuring, realistic and positive, without being overly medical.

Returning to search

As well as the periods of high anxiety, I’ve had some more peaceful times too, where my search behaviour was productive. During periods of low anxiety I’ve been able to participate in a cancer forum in a way that was positive for me, make some connections with other people, and read up on my specific cancer and treatment. During these times I have made quick judgements about whether or not a source I am referring to is something credible or not, and rejected poor content. My cognitive abilities were not so impacted by my life events so I could function online and protect myself.

Experience and understanding changing keyword use

Looking back, during the “waves” of anxiety, stress and fear, my browsing and searching behaviour was erratic, and the terms I would look up changed significantly. Over my diagnosis and treatment journey my language evolved, going from general to very specific, and back to general again. I adapted as I received information directly from the hospital looking after me.

At the point of diagnosis, I was told I had “colon cancer”, however I did not know colon and bowel are used interchangeably, so I didn’t realise Bowel Cancer UK’s site could help me, and I didn’t click on them from my search engine results. It wasn’t until a week or two later it came up in conversation with a colorectal nurse and they told me to look at the Bowel Cancer UK site that I actually did. I can’t say how long I’d have taken to come to that conclusion myself, but it's a good example of how anxiety really impacted my cognitive ability. Interestingly, Google understands that colon and bowel cancer are the same thing, so choosing a term to use may not be as important to organisations as it may first seem for keyword optimisation. Keywords need to match how people use them, and how they get meaning from them.

Further thinking

I’d like to share some specific areas to think about for anyone working in SEO and content strategy for organisations that set out to support people going through medical issues. These are starting points based on my personal lived experience, and will hopefully stimulate ideas and new approaches:

• The same person can search for different terms, using different sets of keywords to mean the same thing at different times in their journey. Unless you have a really solid view of your audience(s) wider user journey you’re at risk of mistaking these as multiple audience segments.
• Anxiety and stress can impact recall, meaning someone can read something useful and forget where it was, and be unable to find it again (because they’re using different keywords to search with). Supporting people means designing content that allows them to find it in multiple ways.
• Plan the onward journey with content: people coming from search engine results pages may bounce back if there isn’t a path onwards that follows the rabbit hole they are researching. You might have successfully answered one question only to have created a new one. Effective signposting could prevent someone from accessing poorer quality, or even dangerous content, and could increase your organisation's impact.
• Design for entirely mobile journeys. I don’t think I looked up one thing on a computer, I have exclusively used my phone for my research activity. For me, using my phone felt more private and personal. Who knows what page navigation I might have missed on the sites I visited that were not truly optimised for mobile journeys? I will have certainly missed a lot of header navigation and labelling.
• Understand your audience(s) trigger words. Members of your audience can have words that will immediately make them disengage and retreat from fear. Be aware of these and consider them within your content production as they will impact user journeys.
• Content strategy is more than publishing content on a website. Social media apps like Instagram and TikTok have their own walled gardens where many potential audience members will be. Content shared in these channels may need to be created differently to others to create the maximum impact, as these are primarily used for human-to-human engagement, rather than the written word. These channels are an important part of any digital service, and give more opportunities for engagement with people.
• Search engine optimisation, and content strategy are core aspects of user experience, and will often be the first touchpoint a person has with your organisation. They matter as much as the design of a page, a workflow or an interaction and can be instrumental in achieving the success of your mission. Creating high quality content that's directly informed by research with your specific audience will increase the impact it will have on your beneficiaries.

I hope these starting points give you inspiration to review your content and SEO. I’m convinced more than ever that content is one of the most important parts of a digital strategy, and designing how it fits within a service determines how effective it will be. I’m really keen to collaborate on content problems and would love to use my experience from working in publishing to help solve these spiky issues.

The SEO team here at Torchbox have done some brilliant work with the NHS to better understand the way people use keywords, and ensure they get to the best content for their needs. We’ve also produced sector reports for Cancer Charities and Health Charities that you might find useful. They are a super bunch of people who are tuned into understanding the nuances of the ways people look for content. If you’d like to talk to any of us about how to make your content as easy to find and impactful as possible then please get in touch via [email protected]