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Introduction

In the UK, there are more than 11,500 new cases of a brain tumours every year, which is equal to a 34% increase in the incidence rate of brain tumour since the 90s. At least 102,000 children and adults are currently living with a brain tumour in the UK alone. This report introduces Alke, a service for people with a brain tumours and their carers, that helps them understand, adapt and easily manage their rehabilitation on a daily basis. Alke has the potential of facilitating the rehabilitation experience of patients with a brain tumour and their carers by enhancing self- management, introducing a digital communication channel for patients and their carers to connect with clinicians, while providing a holistic and personalised approach that understands the patient’s status and supports them in strengthening their cognitive and physical functions through engaging activities. The overall aim of the service is to enable patients to be in charge of their rehabilitation journey. With Alke, we are more than just creating a new healthcare service. We aim to spread the awareness for brain tumour and interconnect patients, carers, physicians, and the support communities. The project has been validated by users, experts in healthcare and technology but has not been implemented.

Process

The process methodology that we used was the Design Council’s double diamond, with great focus on having a user-centric empathetic approach. Using this approach meant that no assumptions were made at the start about the nature of the problems and we based all our insights on the exact needs and challenges that were communicated to us from the users, the people with a brain tumour and their carers. We sought to develop an inclusive and empowering way of creating change to improve the lives of all those involved. In overview, our design process followed 4 stages: Discovery, Define, Develop and Deliver & Validation. 

DISCOVERY
The purpose of this stage was to understand the current system, as well as engage with the primary stakeholders to understand their pains. To begin our research into understanding our stakeholders, we conducted numerous interviews, travelling around UK (London, Basildon, Birmingham, Worcester, Walsall, Derby) in order to meet with patients, carers, and clinicians. As a result, we met with 3 clinicians, 4 patients including 1 terminal patient, 6 carers, as well as the Head of Support of a Brain Tumour Support Charity.

For this stage, we used exploration activities, such as journey mapping (image 1.1) as our primary tool. We wanted to listen and experience the whole journey from the patients’ and the carers’ perspective and highlight, not only the functional bits of the process but also their emotional rollercoasters. This helped us tremendously in understanding the timeframe of battling the tumour, but also what their life was like before the tumour, and how it has changed after the tumour. Most importantly we learned about how they were coping with their current issues and the system and the techniques they had to develop themselves in order to overcome the challenges. For example, one of the carers whose late wife has had difficulty with mobility and suffered from expressive aphasia (difficulty finding the words to express their thoughts), had to develop a technique himself in order to better communicate with her. They had their own system, where his wife would bang her stick twice on the floor if she wanted him to come upstairs. In another example, a patient noticed that often times, the 10-minute consultations were short, rushed, and overwhelmed him with information about which he had no time to look back and ask
questions. So he started a diary, taking notes about his symptoms, doubts, curiosities, and emotions whenever he felt like it was important, in order to share them with the consultants. These insights became very valuable to us in creating touch points and service principles.

Along with primary sources, we followed blogs and read books written by patients themselves, survivors and carers, and generated journey maps for those experiences as well. We were able to learn the pains and emotions, and more accurately document all steps of the experience. In addition to the activity based interviews with the main stakeholders, we created an online survey and shared it on various social media support groups for brain tumour patients and carers. We received a total of 42 responses, 29 from patients and 13 carers. The survey gave us a wide-ranging understanding, in a quantitative manner, of the issues they are facing and verified the insights we had already obtained through the in-depth interviews.

The key insights we gathered from our research are that:

• Everyone’s case is different as people are different and unique. Not only with the symptoms and clinical image, but also with the patient’s personality. As stated by the Head of Support at Brain Tumour Support organisation “There are 130 types of brain tumour and every patient has different needs. You will never find two people that go through exactly the same, even within the same type and grade of tumour.”
• Based on the current ecosystem, patients are the ones who have to reach out to the different available services, either because the services are not communicating with each other or the communication is problematic.
• There is a lack of support information provided to patients when they are being discharged from the hospital to home recovery.
• There is not a particular person in charge of each patient’s journey. People want to feel trust in someone who
  knows all their journey and not just segments of it.
• Physicians cannot monitor patient progress at home or be aware of their progression. As Dr.Cho, a Rehabilitation Clinician said “I can’t know if the patients are doing the training when at home or whether a new symptom has appeared. I have to trust the patients word on it and hope they don’t forget something crucial.”
• Carers are not trained to handle emergencies and even if they do, they struggle to remember what actions to take as they panic and are in a frustrated state of mind.
• Carers are overwhelmed by their caring responsibilities, feeling like they are losing control of their lives over the tumour. “I had to be on call 24/7 and give up my job. I became her nurse, not her sister.” states one of the carers.
• Patients and carers find that the generic consultations are not worth the travel and the hustle, especially for patients with greater mobility or cognitive issues and low-income families or living in rural areas. The husband of a patient explains that “We had to help her get ready 3 hours in advance, for a 10-minute consultation. And after coming back, she needed a week to recover.”
• Symptoms make patients lose confidence, affecting their motivation. In one case, a patient was struggling with connecting the words to their meaning, and although physically able to speak stopped speaking at all, in order to avoid the frustration caused from the miscommunication.

DEFINE
The purpose of this stage was to synthesise all the information obtained from the previous stage to establish variables, our problem statement as well as to set objectives and principles for the service. To achieve this, we laid out all of our findings and started the affinity clustering. Through the clustering, we were able to distinguish themes and patterns that helped us define six variables:

1. Control: Patients and carers feel like they’re losing control and that the tumour is driving their lives
2. Communication: The communication between patients and carers as well as with clinicians
3. Trust: Patients and carers’ trust towards the clinicians and the system
4. Convenience: Simple, concise and easy way to access service
5. Dignity: Maintaining confidence and dignity through the battle with the tumour
6. Emotion: The emotional rollercoaster patients and carers go through during the entire journey

With the six variables, we were able to establish our two problem statements, for the patients and their carers:
How might we create a personalised support service for patients with brain tumour by leveraging technology, to help them regain control of their lives, increase independence and reduce hospital visits? How might we support carers in balancing their caring roles and maintaining their desired quality of life by ensuring that they receive both the medical knowledge and emotional support needed to manage the patient’s conditions?

We established objectives for our service, that not only reflect these six variables but also shape the service principles. We also mapped out our stakeholders by diagramming the network of people who are directly and indirectly involved in the system. Documenting the stakeholders allowed us to focus on the people and set a clear vision for the users.

DEVELOP

The purpose of this stage was to develop our service proposition. With our objectives and principles identified, we began brainstorming, following ideation techniques to design touchpoints. In order to achieve this, we mapped out the user journey, highlighted the pain points in each stage and correlated them with our ideas. In parallel, we created personas for the patient, the carer and the clinician, that not only summarised our findings but also reinforced the empathetic element that challenged ourselves for our concept development.

Once we completed our concept ideation, we documented all of our touchpoints on a blueprint. This allowed us to think through every detail of each touchpoint of our service proposition, by raising questions such as: what is the physical evidence? What needs to be completed in the backend to move on to next stage? What data is collected at this point?

As a result, we developed Alke. Alke comes from the spirit and personification of courage and battle-strength in Greek mythology. It is a service for people with brain tumour and their carers, that helps them understand, adapt and easily manage their rehabilitation on a daily basis. Alke has 3 main components that play together in one holistic journey:

1. Alke Box: A personalised kit for patients, that includes the necessary props for their rehabilitation and its contents get customised depending on the patient’s needs and interests. It includes instruction cards, to inform patients and carers about the objects, Alke bracelet, a mental activity game for cognitive training, a squeezy ball for strength training and stress relief and hobby supplies, as an element to bring the patient’s pre-tumour life back.
2. Alke Bracelet: A wearable that tracks a range of motion during the physical activities patients are performing as part of their rehabilitation, provides buzz notifications for medication intake and detects emergencies such as seizures and falls.
3. Alke App: An app that promotes self-monitoring, rehabilitation training, and progression tracking and includes the following features:

• Symptom tracker - A diary where patients and carers can log their emotions and symptoms and state their intensity, which they can later share with their consultants if desired.
• Communication tool - For patients with speech difficulties to easily communicate their needs and emotions.
• Physical activities - To rebuild damaged muscles and strengthen neurophysical functions
• Cognitive activities - To stimulate and strengthen mental functions
• Teleconsultation - To allow patients and carers to prepare for the consultations keeping notes and questions and have online video consultations with clinicians
• Medication management - To send alerts, reminders and display real-time pill intake status
• Alke to Alke - For patients to connect with other patients with similar journeys from around the world
• Events Calendar - With information from support groups and charities on upcoming events, conferences
  and support group meet-ups.

These three components along with a backend of data analysis, kits personalisation, technical and customer support, and a support network, including rehabilitation experts, other patients and support charities, aligns with the established objectives, thus improving the rehabilitation journey for both patients and carers. Through the service journey mapping from a patient-and carer-centered point-of-view, we illustrated how Alke works, and how it improves the quality of the user’s rehabilitation journey.

DELIVER AND VALIDATE
We created physical and digital prototypes of the Alke Box and Alke App, in order to reach out to people for testing and validation of the service. We validated our service within three categories, Desirability, Feasibility, Viability, through conducting different experiments and following different methodologies.

More specifically, for Desirability, we tested the attractiveness of the service to the core users, as well as its usability and usefulness, through conducting 1:1 interviews with carers and patients, where they were able to use a working prototype of Alke app and interact with the Alke box. We also organised a feedback forum during a Brain Tumour Support group session in Birmingham and introduced the service and posted Alke’s website on various social media support groups for patients with brain tumour and carers to receive their feedback.

Furthermore, in order to get more targeted feedback on our physical prototype of the kit and its use, we sent the Alke Box for 10 days to a patient that aligned with the persona according to which we had designed the prototype for, and asked them to interact with it and document the experience. In terms of Viability, we explored the potential of the service being implemented in the real world by sharing our
service proposition with Dr Neha Tanna & Dr James Somauroo, experts from the Health Foundry (incubator for digital health innovation unit), in order to understand how Alke could play a role in the healthcare business world. Also, we shared our service proposition with the Head of Design at NHS Digital, Matt Edgar, to understand how Alke could fit into the public healthcare sector.

Finally, in terms of Feasibility, we explored the ability of the service to be developed in terms of technology, interviewing three technology experts (Mechanical Engineer, Electrical Engineer, Engineering Technologist in Automation & Robotics), to understand the scope of technology used in Alke and the potential.

In terms of Desirability, we received very positive feedback. Patients found alke’s features to be useful for their rehabilitation and carers acknowledged the benefit it could bring to ease their caring responsibilities. “I can really see the value in features such as the seizure detection alert. Sometimes it's difficult for me to understand if she is having a seizure or it it’s something else”, a carer stated. Patients were very interested in the data generated and were willing to share their data anonymously for research purposes. A patient, who was a former nurse said that “It would be really great if I could actually show my clinicians my progress, rather than just trying to put it into words.” In terms of the business side of the service, people were worried about data being misused to support charities’ own profit, as a patient stated: “Alke stands up because it’s a stand-alone service, not affiliated with any other organisations.” From the in-action testing, we were pleased to hear that the users were really happy with the aesthetic and the contents of the box and set activity-dates every evening in order to interact with it. The patient’s children were also excited about it, which pushed her and made her more motivated to interact with the kit and complete activities with her family.

In terms of Viability, people could see the value of the service and acknowledged its potential, motivating us to continue with the project and push through. “I love it because it’s patient-centric, carer-centric, physician-centric, system-centric. Think big! Make it reach people’s hands early through private hospitals and then go to NHS.” - Dr James Somauroo “It’s worth trying for the NHS App Library. You already tick all the boxes for user-centric approach and involving the patients.” - Matt Edgar In terms of Feasibility, we were assured that both the App and the Bracelet are technologically feasible and the Inertial-based MEMS (Micro-Electro-Mechanical Systems) sensors and in particular IMU (Inertial Measurement Unit) motion-capture systems required are available.

Output

No two brain tumour cases are the same. Furthermore, one’s rehabilitation needs differ greatly based on their clinical image and personality. There is no doubt that brain tumour rehabilitation is a complex and unique challenge. With our patient-centric approach, Alke brings value to the people and organisations involved in one’s rehabilitation journey, while incorporating other stakeholders’ needs and offers into the system.

Alke benefits patients and carers by increasing medication adherence, improving the communication between them and offering personalised and guided rehabilitation activities to patients. Furthermore, it transforms consultations into a more effortless and efficient experience and provides alerts and guidance for emergencies. At the same time, Alke benefits hospitals and clinicians by providing accurate monitoring of patient’s progression at home and helps them attain a complete understanding of patient’s health state, allowing them to make improvements depending on the progression.

As a final deliverable of the project, we were able to deliver a presentation of the service, a video explaining the service and illustrating how Alke helps ease the rehabilitation journey, a Facebook Page & Chatbot, the website for the service, a physical prototype of Alke Box and a digital prototype of Alke App.

Impact

Implementation of the service has not finished as we didn’t have a specific partner for the project, therefore we can not provide metrics on its impact. In the future, the impact will be measured through a combination of data analysis and cognitive and neurophysical progression monitoring, as well as individual case studies illustrating qualitative improvements. After our feasibility and viability validation, we saw a big interest and potential in implementation, as Alke can benefit both its users and the providers. More specifically, patients receive personalised support, they become more in charge of their own rehabilitation and avoid the frustration of unnecessary emergency visits or
ineffective consultations. They become pro-active proprietors of their rehabilitation and their data. On the carer’s side, through Alke, we relieve some of the stress off of the carers and allow them to reclaim their role as family members and not as ‘nurses’. This allows them to spend more quality time together as a family, while receiving the necessary information and medical knowledge to handle the rehabilitation and possible emergencies.

As the journey of a brain tumour patient isn’t linear, data collection (image 5.1) plays an important role in their rehabilitation, as it allows clinicians to notice symptom patterns, exacerbations and hints of imminent deterioration early on and intervene accordingly. Alke supports patients to cope in everyday life, connecting them with the support they need (image 5.2) and increasing their autonomy and self-monitoring, which helps the clinicians have a complete understanding of the patient’s progression and health state. This has an associated cost benefit for the NHS, as it reduces readmission rates and unnecessary emergency visits and promotes in-home monitoring
and digital consultations.

As we have previously seen in the case of stroke, which affects patients in a clinically similar way to brain tumour patients, rehabilitation interventions have reduced readmission rates, saving NHS over £75,500 per person. At the same time, the reduction of emergency visits can save NHS and additional £197.50K per year, by reducing the number of attendees. Therefore, patients with brain tumour monitoring their conditions could help NHS meet part of its £20bn cost-savings programme.

As our ultimate goal is to reach NHS, get an endorsement from NHS Local hospitals and join the NHS Apps Library, we would need to go through a step by step approach in order to provide adequate validation on how our service has improved the quality of rehabilitation in action. Therefore, our business plan consists of five steps: Get initial funding in order to develop the MVP, test the MVP in 5 rounds of 20 people (total 100 people) and iterate the prototypes according to the feedback and then pilot the service to private hospitals and sell to insurance companies. For the Insurance companies, this would be an appealing service as it can save service pay for brain tumour patients through the reduction of EMT visits which would cost £100 and up for each visit per patient, the reduction of readmission fees (£250-300 per night, per patient), as well as the reduction of additional side effects as patients medication adherence, is improved, which would result in consultations that cost: £150-£200 per consultation.

Conclusion

Working on Alke was a 6-month journey full of educational personal takeaways for us. Since we weren’t working with a specific partner we had to push ourselves a lot from the beginning in order to manage to reach out to patients and experts and enter the small in size brain tumour community. Having been through similar journeys with our family members, we could empathise with our audience and managed to gain their trust and become a part of the brain tumour community with joy. This helped people open up more during the research and exploration phase, which gave us valuable insights and helped us understand the struggles that people with brain tumour and their families are facing.

Alke was accepted by all these people with great positivity and anticipation and feels like it’s a project that is worth taking further, as it could be of great value to them. Thus, we are more than interested in pushing through and continue developing the service and we hope that we will see it implemented in the near future.

To us, Alke is much more than a self-monitoring support rehabilitation service. It is about the emotional benefit that it can have for patients and their families and the moments of personal connection and joy it can be a succor to bring to them.

References

• Brain, other CNS and intracranial tumours statistics, Cancer Research UK,http://www.cancerresearchuk.org/health professional/cancer-statistics/statistics-by-cancer-type/brain-other-cns-and-intracranial-tumours#heading-Zero, Accessed [June] [2018].
• National Audit Office, Department of Health. Delivering efficiency savings in the NHS Department of Health, 2011. https://www.nao.org.uk/wp-content/uploads/2011/12/NAO_briefing_Delivering_efficiency_savings_NHS.pdf
• NHS England Commissioning Guide for Rehabilitation NHS England, 2016. https://www.england.nhs.uk/wp- content/uploads/2016/04/rehabilitation-comms-guid-16-17.pdf
• Royal College of Occupational Therapist. Reducing the pressure on hospitals. Perth: The Department, 2017. http://3clw1r2j0esn1tg2ng3xziww.wpengine.netdna-cdn.com/wp-content/uploads/2017/07/ILSM-Reducing-Admissions-A5-6pp-SINGLES-final.pdf
• The statistics, Brain Tumour Charity, https://www.thebraintumourcharity.org/get-involved/why-we-need-your-support/the-statistics-about-brain-tumours/, Accessed [June] [2018].