There is hardly a family in Denmark that hasn’t been touched by cancer. One in three Danes will contract the disease, and around 250,000 are currently living with it.
Thankfully, a cancer diagnosis is no longer the death sentence it once was, as improved treatments are keeping sufferers alive much longer than only a decade or two ago.
Patients must still cope with the unpleasant side effects from these life saving treatments, however. Chemotherapy, for example, can result in hair loss, diminished appetite, nausea and – for patients who receive it intravenously – sometimes require long days spent at the hospital.
But chemotherapy patients in the future might have more time on their hands thanks to a home chemotherapy system that has been under development at the Department of Haematology at Copenhagen’s Rigshospitalet since 2014.
Consisting of a non-descript bag containing an IV bag of chemotherapy, a pump, and tubing that attaches to a patient’s catheter – usually on the chest – the home chemotherapy device allows leukaemia patients to receive chemotherapy regardless of where they are, or the time of the day.
The latest prototype is called Chemo to go, Please!, and has been developed in collaboration with students from the Royal Danish Academy of Fine Arts, School of Design (KADK).
Rie Maktabi, one of the designers, can attest to the ways that the home chemotherapy system has changed people’s lives.
“The patients just bike home. We even met a patient who went to university with his pump. People are moving freely, and live normal lives. They also sleep better at night and eat more because they feel more comfortable at home. This is especially important because chemo can make it difficult to eat,” Maktabi explains.
“It also strengthens them psychologically if they can spend more time with their family and children, instead of being in hospital. These different aspects come together and create a better experience for the patients.”
Home chemotherapy has upturned the traditional relationship between patients and healthcare providers. Not only could hospitals make enormous savings by freeing up beds and resources, there is also hope that patients will respond better to their treatment if they are more active and spend less time in hospital.
But while home chemotherapy has the potential to radically change what it means to be a cancer patient, doctors will first need to get used to letting go of control.
“Giving more responsibility to patients to manage their own treatment requires some bravery,” says Maktabi. “Medical staff are used to being able to access patients whenever they like. But now they can give the patient chemo and just send them home.”
Less time in hospital
The first Danish home chemotherapy prototype was developed by Katrine Seier Fridthjof, a project nurse in the Acute Leukaemia Department at Rigshospitalet. She had visited a hospital in London that used the pump and bag to deliver chemotherapy, and realised that Rigshospitalet’s leukaemia patients could benefit from it too.
“Leukaemia patients need to be given the chemotherapy every 12 hours, so we have to give it to them early in the morning and in the evening,” Fridthjof explains.
“But because the ambulatory departments are closed at this time, we have to keep them in a ward for the ten days they get the chemotherapy for. That’s why we thought the transportable pump would be a good idea, as the patients would only need to come in every third day for an hour or so to swap out the chemotherapy.”
Fridhjof was granted six months to develop the system through Rigshospitalet’s competition IdéRiget, which allows staff to submit their ideas for improving patient care. After trialling the idea on 10 patients in 2014 she won the competition, and was given another year to continue work on it.
Her department rolled it out to another 300 patients in 2015 and quickly saw the improvement to their lives. But the patients also had some complaints, especially with the bag that came with the pump.
“One of the patients was on the bus and was worried that because it made a noise, and you could see cables coming out of it, that it would be confused for a bomb,” says Fridthjof.
The bag was also unattractive, uncomfortable and couldn’t be washed repeatedly, which meant that it could pick up pathogens that would pose a threat to their health, because chemotherapy suppresses the immune system.
Fridthjof decided they needed some expert design help, and through a contact at Odense University Hospital she was put in touch with KADK, which passed on the assignment to the Master’s program in CoDesign.
Rather than focus on a particular type of end product, CoDesign students use a variety of tools and collaborative techniques to understand a particular problem and create a solution.
“I was more free to go into the field without knowing what exactly we would end up with – I loved the freedom,” says Maktabi.
For eight months, Maktabi and fellow student Isabel Aagaard were immersed in Rigshospitalet’s Department of Haematology where they followed staff and patients in order to find the best way to design a new bag for the chemotherapy and the pump.
“We wore medical clothes and ate lunch with the medical staff and had long conversations with patients. We wanted to know the good and bad sides. It’s been a really tough ride – it’s not just been fun. Some patients you get close to and spend a lot of time with and they tell their whole life story and then the next day they are not there any more. That was really difficult.”
Through interviews, workshops, games, sketching and generative prototyping, they gathered insights that were needed to redesign of the chemo bag. The final prototype – that was designed together with students Xénia Geller and Melanie Povlitzki – is waterproof, washable and insulated, so the IV fluid neither gets too warm or too cold. It also looks a lot less like a medical device, with a functional appearance and space to store a wallet or mobile phone.
In addition to redesigning the home chemo bag, Maktabi and Aagard also designed some other services that could improve the delivery of the home chemo system. When they visited the homes of the patients, they thought it might be a good idea to create some material that is kept on the fridge to remind the patients to follow their treatment routines and to eat.
“But we found that they wanted to forget the hospital and did everything they could to hide that they were a patient. Patients with children were especially keen to hide anything that looked medical. They wanted their kid’s drawings on the fridge – not a reminder that they were ill,” says Maktabi.
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With less access to medical staff, however, they still thought it was important to make sure that patients had all the information they needed while at home. So they designed a patient information website to replace paper documentation that was harder to keep track of, and which they found often had conflicting advice and information.
They also created an interior design guide, based on simple and easy-to-replicate principles, which hospitals can follow when creating their check-up facilities. The goal is to make sure the environment is relaxed, and the meeting between patients and health care professionals is as comfortable and efficient as possible.
While neither the website, nor the design guide, have yet to be implemented, Fridthjof says the experience of working with the designers exceeded her expectations.
“It was great and such a dynamic cooperation. The mix of medical staff, designers and patients worked really well together.”
Benefits of being active
Rolling out home chemo for cancer patients might seem a daunting undertaking for hospital administrators, fearful of losing control of the patients they are meant to care for. But Fridhjof explains that there are several of benefits to giving patients more control over their treatment.
Firstly, because chemotherapy can suppresses the immune system, patients are susceptible to the dangerous pathogens that thrive in hospitals. This is also why patients who take their own blood samples through their chest catheter are less 50 percent less likely to suffer infection than if the blood sample were taken by medical staff – their body is already familiar with the bacteria on their own body and in their home, whereas they have much less protection from the less familiar pathogens that could be introduced by the medical staff or hospital.
Fridthjof also points out that patients recover more quickly when they are active. For the types of chemotherapy that have to be delivered intravenously, patients have to remain in hospital attached to a drip stand for up to hours at a time. With the pump, the chemotherapy can be delivered while they are on the move.
“I think being more active improves the treatment. They sleep better at home, their mood improves, they experience fewer side effects, and less medication to treat nausea that can drain their energy.”
Many of these benefits are also experienced by non-cancer patients who also use a portable pump to deliver other fluid medications such as antibiotics.
A matter of perspective
Maktabi and Aagaard graduated from KADK in the summer and both found work as codesigners at Nyt Hospital Nordsjælland, a new ‘super hospital’ that is being constructed north of Copenhagen.
But while their day job is designing its maternity unit – the “delivery room of the future” – they have also started a company to manufacture and sell the CTGP bag. The current prototype is entering small-scale production and is being rolled out in Rigshospitalet and Odense University Hospital over the coming months.
Their role in developing service design requires examining problems from every perspective, rather than designing a solution that suits the need of only one stakeholder – the patient, the hospital, or the staff, for example.
Maktabi points to the blood tests the patients have to take as an example. When Maktabi’s team saw the material nurses used to teach patients to take the blood samples, they noticed an obvious problem – all the photographs were taken from the point of view of the nurse.
“So what we did was document a patient taking blood from his own perspective, by putting a small video camera on his shoulder. It was these small discoveries that made a huge difference.”
Fridthjof says she would like to see the information website and the design guide implemented, but a lack of funding prevents it.
“The patients especially really want the website. But if we create the website, we will need to hire someone to manage it and we simply don’t have the staff for it,” she says.
With such pressure on their finances, hospitals are clearly interested in initiatives such as home chemotherapy. The trial at Rigshospitalet has so far used 350 mixed antibiotic and chemo patients and saved 800 hospital bed days, which cost around 6000 kroner per day.
Maktabi has seen first hand how the lack of resources in hospitals places enormous pressure on the staff, which then affects the treatment they give patients.
“If we are to have a welfare state that works in the future, then we need to reduce the pressure on medical staff. But we can’t improve their working conditions by keeping patients pacified. They need to play a much more active role in their recovery. And that’s why we need design.” M