Can Design help people living with cancer improve the quality of their sleep?

This end of July was truly special. After months of research and preparation, Big Radical ran our first Design Jam, exploring how to use our skills as a company to help people living with cancer sleep better. The event took place at Big Radical’s office in Soho, London. With a mix of specialists, including health care professionals, user researchers, designers, technologists and patients themselves participating over three days, the event was deeply fulfilling and an unforgettable experience for everyone.

Why cancer and sleep?

This project initially started from a series of conversations between Maggie’s Centres, The XDs, Big Radical and Cancer Research UK (CRUK). We discovered that difficulty sleeping is a common problem for most people living with cancer. According to NCBI, between 30 to 50 percent of people living with cancer have experienced sleep problems. However, chronic sleep loss and poor sleep quality are the most common, yet frequently overlooked issues. Trouble sleeping is often dismissed as a normal reaction to the cancer diagnosis, medication and related treatment.

However, according to Dr. Altshuler’s research, lack of quality sleep for months, even years, can reduce the effectiveness of his or her cancer treatment.

With the number of people living with cancer in the UK set to grow from 2.5 million to 4 million by 2030, according to Macmillan, nearly half of Britons will develop cancer in their lifetime by 2020. This is a shocking number yet this also signals that there is a growing need for more information on best practice for people living with cancer and their support groups.

At Big Radical, we initiate projects that we truly believe in, in order to use the power of tech as a force for good. Helping people with cancer to sleep better could have a positive effect on millions of people’s lives. This is why we wanted to help.

Step One: Talk to the Real Experts

Our first step was to interview people living with cancer who experience sleep problems first-hand. Thanks to CRUK, we organised our first workshop to understand the issues around sleep quality for people living with cancer and their carers. Our initial hypothesis was based on Delannoy J and others’ research[1] on how emotional experiences we have during the daytime (diurnal) can affect our sleep at night.

We hypothesized that if we could find out what happened in people’s daytime journey we ought to be able to identify what could have impacted their sleep experience at night. After interviewing people living with cancer, we found that most people with cancer have very busy schedules, especially when they are under treatment. Most patients are sent home within the first week of their surgery, so they have to travel between home and hospital on a regular basis. Because of the medication and treatment, people with cancer constantly feel fatigued and low energy. Waking up three or four times per night was the new norm for many interviewees we talked to. However, when we asked about seeking help, very few people have expressed their sleep problems with their carers, family members or healthcare professionals. Many patients mentioned social barriers, such as not willing to talk about the ‘c-word’ and the daily frustration they are experiencing. These could all prolong the time it takes to improve the situation. It was clear after talking to experts and suffers, that the severity of disturbed sleep has a devastating impact, yet very few have asked for help or were provided with appropriate treatment and support.

Thanks to CRUK, we organised our first workshop to understand the sleep experience and quality for people living with cancer and their carers.

Step 2: Identify the problem

The size of our qualitative research is nothing compared to standard clinical research, however it did match up with Carolyn Vachani’s findings on insomnia, which also indicate that only 16% of cancer patients with trouble sleeping informed their healthcare providers about these problems. Sleep problems in relation to cancer are often not seen as a priority and dismissed as a normal reaction to the cancer diagnosis and treatment among practitioners.

We’re not attempting replicate what specialist nurses, psychotherapists or sleep specialists can do for cancer patients. On the contrary, we wanted to work with these healthcare professionals to identify where they think technology could be a valuable help for people living with cancer. From a digital product and service design studio’s perspective, our goal is to find a way to create appropriate tools to enable people living with cancer to improve their sleep experience.

Based on clinical research, plus the end user workshop and interviews, we learnt that emotional distress is usually the main reason people with cancer don’t sleep well. Unsurprisingly, the uncertainty about the future, worries about family and elderly parents, even stress from work during treatment could overload patients with cortisol and adrenaline — the fight-or-flight hormones that cause panic and anxiety — and sleep loss. These overwhelming emotions are often exacerbated by the isolation at night time. In many cases, this sleep deprivation could even last years and continue after the person has recovered from the illness.

Sleep deprivation could continue even after people recovered from cancer, according to the interviewees we spoke to.

Step 3: Rooting out the Root Cause

However, the main cause of anxiety could vary depending on an individual’s situation and the care experience they receive (which could be influenced or determined by the type of cancer they have, according to our interview findings). For example, many interviewees experience ‘scan-xiety’ before every scan or medical appointment. There are also different types of anxiety people living with cancer might experience, from loss of one’s sense of ‘self’ to an impaired quality of life; from the feeling of being ‘locked in’ to a fear of the cancer recurring. The breadth and depth of the anxiety that people with cancer are experiencing is hard to imagine if you haven’t experienced it directly.

To understand the bigger context that might trigger these anxieties, we interviewed people who understand the intricacies of today’s healthcare system.

The cancer journey today is not only more complex but more disjointed, according to Macmillan. It involves different care interventions from various multi-site professionals. In one kidney cancer patient’s care journey for example, there are 23 to 25 different specialists involved in their care programme. This system includes primary care professionals, secondary care professionals, counsellors and therapists who look after the patient’s emotional well-being, including hospital officers, citizen advisors and insurance agents who offer practical support on finance and legal issues. There are also palliative care teams who help relieve patients’ symptoms, manage their pain and improve their quality of life.

In the new NHS healthcare system, there is no one single party responsible for the overall quality of care that a patient receives. Therefore, the patient becomes responsible for organising their own treatment, by keeping everyone on the healthcare team informed. Just thinking about the amount of information and decisions that the patient or carer needs to make is already overwhelmingly overwhelming.

Step 4: Mission Set

While we want to help, we are also aware that technology — and hand-held screen devices in particular — can be a double-edged sword when it comes to sleep. Some interviewees cited that they would try to avoid using digital devices at least one hour before bed, due to the blue-light effect. What about non-screen based wearables and other sleep products? Well, two things here. The first is, 50% of cancer patients in the UK are aged over 70. Smartphone and tablet ownership might have seen large increases but wearables certainly haven’t reached significant numbers in this demographic. The second is, most of the sleep products that we’ve seen (or can find on the market) are certainly not designed for people living with cancer.

Breaking into groups and gathering research

On realising the urgency of the problem, we thought… well someone is going to have to solve this one day… can we be that someone?

Yes we can.

Instead of ‘let’s wait and see’, we felt sure we could do something.

Putting to one side the aspects of the problem we can’t change (i.e. the side effect of the medication or certain cancer treatments that actually result in disturbed sleep), we decided to focus on the emotional aspects of people’s sleep problems.

We had two primary goals in mind:

● Increase the understanding of sleep problems and the impact on cancer patients and the people around them.

● Empower people with cancer and their immediate circle of care (carers, nurses, friends and family) with the right tools to better manage anxiety* (the cause of their sleep problems), so they could have a better sleep experience.

Anxiety is the most frequently mentioned word coming out from our interviews, but the root causes to anxiety may vary based on individual’s situation. We need to first understand the different triggers to people’s anxiety should we wish to tap into the real problem.

That’s how this cancer and sleep Design Jam began.

Cancer, sleep and anxiety, three serious topics in one Hackathon, it definitely sounds like mission impossible. We haven’t lost our mind here. We know we cannot ‘solve’ the problem within three days. No one can. However, we are taking actions to raise awareness of the issue and the urgency of this ‘hidden’ problem.

If you are interested in knowing more about what we are doing for Design Jam at Big Radical, feel free to get in touch and be part of this Tech for for Good movement.

[1] Delannoy J, Mandai O, Honoré J, Kobayashi T, Sequeira H (2015) Diurnal Emotional States Impact the Sleep Course. PLoS ONE 10(11): e0142721.