Why this project?
"As a Crohn's Disease patient and a passionate designer, I wanted to find out what I can do for children who have similar disease experiences as myself. This master thesis offered me an opportunity to give something back to the community that helped me when I was younger."
A 20-week master thesis with unrestricted support from Shire Pharmaceuticals and non-profit organisation ImproveCareNow. Executed at the Umeå Institute of Design in Sweden, from January 2018 till June 2018.
Crohn's Disease and Ulcerative Colitis are the tow main forms of Inflammatory Bowel Diseases, affecting more than 1,400,000 people in the US and over 2,500,000 people in Europe.
It is of great importance to educate yourself in order to achieve a sense of independence, self-reliance and control over your disease. Unfortunately, children face problems when it comes to understanding complicated medical language and the variety of content that is available.
Pling is a digital application that uses a patient’s electronic health records and translates these into age appropriate health literacy. A personalised learning platform allows him/her to understand what they have been through, what to expect in the near future and how to act upon it in a more engaging way, rather than flyers, books and paediatric consultations.
The result in a nutshell
Pling; improved health literacy
Pling is a digital application that aims to improve initial education for recently diagnosed, paediatric Inflammatory Bowel Disease patients. The app uses a patient’s electronic health record as a foundation for patient-tailored health literacy. Educating yourself is an ongoing process often steered by personal preferences. When a child is diagnosed with a chronic disease, they are expected to learn about their condition. It is of great importance to educate yourself in order to achieve a sense of independence, self-reliance and control over your disease. Unfortunately, children face problems when it comes to understanding complicated medical language and the variety of content that is available.
The result in a nutshell
Your health records used to personalise health literacy
Linking a patient’s electronic health record to the application, makes sure that the information that is shown to a patient is based on their own disease-related encounters, rather than generalised information. Generalised information is information that is applicable for the majority of patients, based on the results of quantitative research. This information is often distributed via flyers, brochures, websites and non-profit organisations’ websites. Pling adds a layer to this general information in order to prioritise the most relevant information and communicate to the child in a conversational way. It transforms information that’s used to talk to a large group of people into a information that’s applicable for a specific patients. Transforming generalised information into patient-tailored health literacy requires the application to be adaptable. The underlying IT-system of Pling grabs elements of the EHR and integrates these into the generalised information, creating an application that is unique for every patient, without the need of manually writing text for a patient. Pling can be seen as modern, digital children’s book that is available anywhere and can be read by the child alone, while experiencing as a story that’s told by a parent.
What does a child need to know?
Pling can be used with, but also without infusing a patient’s EHR to reach as many patients as possible. In order to gain a child’s attention, it is important to communicate them in a rather informal and personal matter. By infusing all the data that is available about him or her, such as personal details, clinical results, notes during consultations, information regarding surgeries they underwent, abnormalities paediatricians saw during endoscopies, experiences of prescribed treatment, experienced symptoms prior to treatment etc. Pling customises parts of the health literacy to a patient’s disease experience. Patients can be addressed on a more personal note, besides all the child friendly health literacy Pling provides for the user. This does not mean that every sentence is customised per patient, as there is simply not an extreme amount of patient data available. In order to increase patient engagement, the customisation of Pling mainly happens in the introductory part of health literacy, meaning the first sentences and images of a particular topic. The result is that the patient will be addressed on a more personal note when he or she opens a piece of text, rather than generalised medical jargon that reaches everyone in one framed way. It is expected that addressing patients in the beginning of every topic on a personal note builds up a sense of trust and empathy.
After retrieving a patient's EHR and a short onboarding process, the user will end up in the main menu, where he or she can choose between the four different educational chapters; What the …?, Just beat it!, You are not alone and Who’s the doc?. The main menu will also show the user how many badges are left to achieve, if they have received new notifications from other patients and allows the child to change settings.
i. Retrieving records and onboarding
After retrieving a patient’s EHR, the child goes through a short onboarding program. This is where Pling greets the child in a friendly matter, asks him or her to choose a character and explains the benefits of the four chapters Pling has. It tells the child, in a conclusive way that they recently have been diagnosed with Crohn’s Disease (variable added by care giver) after experiencing certain symptoms (variable added by care giver) and that they have been put on a treatment (variable added by care giver) which will help them to prevent previously experienced symptoms from reoccurring. The quick onboarding trajectory mainly functions as an executive summary for the child, where the negative disease experiences prior to their diagnosis are converted into hope.
how does your disease affect you?
ii. What the ...?
One of the core chapters of Pling regards understanding the implications of a diagnosed chronic disease, in this case Crohn’s Disease, on your overall wellbeing. The name of this chapter ‘What the …?’ is chosen because lots of children do not understand why this disease is targeting them and might feel lost in understanding the implications of it. In a way, the title represents their current state of mind and would therefore increase user engagement.
Once the child opens this chapter, it can choose between different subjects. These subjects are ranked in such a way that the child will first learn more about what’s inside their own body, why this occurs to their body and what the effects of Crohn’s Disease is on their body. Other subjects range from extraintestinal complications, future complications, expectations of surgery and more. The order of the subjects is chosen in such a way that the child will first build a proper foundation, where layers of information will be added.
how can you beat your newly diagnosed condition?
iii. Just beat it!
The second chapter ‘Just beat it!’ provides insights about treatment and relevant coping strategies. Again, the name of the chapter is chosen so it communicates hope and optimism. This chapter is also divided in subjects, same as the ‘What the …?’ chapter. The subjects range from current medication, dietary recommendations, sport recommendations, communication strategies, alternative therapies and additional services that are provided by profit or non-profit organisations.
As the type of medication(s) and its dosage(s) can be retrieved from the EHR, these types of medication can be prioritised above the explanation of other types of medication. In a rather playfull way, Pling asks the user if he or she the implications of the medication. This way, the child will be triggered to think about the given medication and answers back. As a result, education becomes more of a conversation rather than the absorption of written text. More importantly, with the help of visuals and storytelling, an abstract pill can be contexualised. In the example of white, circular pills, children will follow a journey in which the pill is the main character and shows in a rather visual way the effects on a human body.
increasing engagement with others
iv. You are not alone! & Who's the doc?
Talking to friends or family about a chronic, invisible disease can be difficult and research has shown that children do not always want to talk to people they know about their disease experiences. Pling users are able to communicate with each other, are able to ask or answer questions to and from other users and have the freedom to do this anonymously. Patients can also link their Facebook account to Pling and Pling will help them to find others, locally, nationally or internationally. As the location of a patient can be retrieved from the EHR, Pling can recommend in-person support groups.
Providing care, getting patients in remission and making sure they adhere to their treatment is often top priority of a healthcare team. In order to succeed, everyone in the healthcare team has a specific role. For a child it can be difficult to understand who to reach out to with certain questions. This chapter provides information about everyone involved in the healthcare team, ranging from the paediatrician, IBD-nurse, pharmacist, social worker, but also parents, friends and schoolteachers, soccertrainers etc. A child will be made aware that living with Crohn’s Disease can affect more than just your gastrointestinal tract and that informing and being honest with everyone within your close circle is important.
Developing a digital application requires sets of principles that the application follows throughout its lifecycle. The principles are based on in-depth user and desk research.
Encountering long pieces of text can be quite overwhelming for the young ones, as they will know it take quite some time to read it. Reading books is not what an average child likes to do, as it requires focus and can get easily distracted. Pling breaks down information in categories, subjects, topics and blocks in order to not overwhelm the child with information.
Age appropriate language
A ten-year old child has a different intellectual capability than a nineteen-year old adult and can therefore experience difficulties when it comes to understanding complex medical information. As paediatric IBD occurs less frequent than adult IBD, the majority of information a person can find online targets the adult population. It is easy to imagine that a child has difficulties understanding this information, has difficulties relating this information to their own disease and explaining this to others around them.
Children books are successfull as their balance between language and semiotics is appropriate. Their extensive use of semiotics is carefully chosen for the target group as it gets often the meaning better across than text. Pling uses a library of illustrations and animations that provides information about the topic the child needs to be educated about. These illustrations and animations can tell a story about medications often better than language can and therefore justifies its extensive use.
How did I tackle all of this?
20-weeks of collaborating!
In almost every chronic disease, it is not only the patient who is emotionally suffering from the consequences of his or her disease, but also their family. Within the field of paediatric IBD, the caretaker (often parent) plays a big role in a patient’s disease experience. Often they provide the child with information, asses the severity of their disease, call a paediatrician when symptoms worsen etc. It is of importance to take their concerns into consideration in developing solutions that improve the disease experience in paediatric IBD care. Developmental issues of a child is of greater concern to paediatricians and often take the training of family members into account when consulting, rather than just the child.
Access to new disciplines and information outside the design field was within reach. The team at Shire that focusses on developing and marketing a new biologic for adult IBD patients exists of biologists, technical chemists, physicians, marketeers, patient service leads, registered nurses and business managers. Their extensive knowledge was taken into account during weekly meetings. Besides working with Shire’s internal cross-disciplinary team, resources outside Shire were used to find unmet needs in paediatric IBD care, such as behavioural psychologists, IBD nurses, paediatricians and adult gastroenterologists.
Shire is an established pharmaceutical company and works together with several non-profit organisations and patient associations. Prior to the official start of the thesis, a collaboration was set up with the ImproveCareNow organisation and the European Federation of Crohn’s and Colitis Associations with the goal to talk every two weeks to one of the associations in order to validate the research findings and include their needs and expertise.
increasing engagement with others
IBD Journey map as a facilitation tool
One of the major activitities that was done during the research phase was the facilitation of a workshop at one of Shire’s strategic offices in Zug, Switzerland. Mid-February I hosted a one-day workshop in the Shire’s Zug office where five Shire employees joined. Non of these people obtained a degree in design, but do have experience in developing products, may it be a service, support programs or the introduction of a new drug. Their diverse experience, with backgrounds ranging from biologists, technical chemists, marketeers, patient service leads and medicine, allowed me to identify opportunities across a broad spectrum.
educating in paediatric care
Cultural probe as a voice for patients and parents
The main goal of cultural probing is to identify unmet needs in specific contexts, which in this case is paediatric IBD care. Parents and children were asked to fill in questions, take photos, solve scenarios and complete creative exercises. The cultural probe offered a possibility for the parent and child to express wishes and exchange ideas, besides sharing the problems they are facing on a daily base. As the opportunity did not occur to meet the target group in-person, sending cultural probes was an appropriate way of involving the target group in this thesis. For seven days, the participating children and parents were asked to fill in questions, solve scenarios and execute creative exercises, independent of each other. Due to language barriers, the UK was chosen as an area for cultural probing.
educating in paediatric care
Writing articles to raise IBD awarenes
I set myself the goal to include as many stakeholders as possible in this project, continuously, to learn from and validate research findings, ideate and validate solutions with them. One of the ways I tried to reach out to patients, parents, professionals and others who have an interest, was by writing articles for ImproveCareNow and the European Federation of Crohn’s and Colitis Associations (EFCCA). Early February 2018 the first article was published on ImproveCareNow’s website, called; Design and IBD? This article explains in what way design methodologies can be used in order to improve a patient’s life. It also allowed me to engage with the ImproveCareNow community and reflect on the research findings.
educating in paediatric care
Framing design considerations
Based on the identified problem areas, it can be concluded that the transition program is in practical terms not always as smooth as the theory describes it. As children grow up, their behaviour, intellectual capabilities, level of expected independence and environment change accordingly. It is known that IBD is a highly individualised disease and therefore some patients experience more frequent and severe symptoms than others. Research shows there is no lack of access to general IBD information for a patient or parent, however, access to medical records is not a given to all patients and parents. In order to understand how the disease has affected a patient in the past, how IBD is currently affecting the patient and how it might affect the patient in the future, it is expected that providing patient-tailored information, additional to the team-based consultations with the paediatric care team, about their condition increases knowledge and therefore self-reliance. As education is the first step in the transition program, which promotes independence and self-reliance, and increases patient engagement, it is fundamentally important to stimulate patients and parents to educate themselves.
educating in paediatric care
From design considerations to design opportunity
Based on market research, reviewed literature and expert interviews, it can be concluded there is a need to self-educate patients outside the hospital. The goal is to create an engaging tool for paediatric patients and parents that allow them to educate themselves based on their disease experience. Research shows that the effectiveness of education can be affected by IBD, caused by constant tiredness, frequent toilet visits and difficulties in focussing. There is a conflict, where education is needed but sometimes hard to achieve. The ultimate goal is to create a solution that allows patients to get the information they need in an easier and more engaging way, using improved storytelling and with a final goal of achieving a state of self-reliance prior to moving to adult care.
Creatively translating insights into solutions
This phase is where research insights were converted into visual material, may it be physical or digital. Based on the main question, the ideas targeted three different topics: endoscopic learning, optimised symptom searching and accellerating the identification of trigger foods. During this phase, artefacts were bought and created to simulate scenarios, wireframes were created and several softwares were used to visualise potential outcomes.
Sketch and prototype
Communicating ideas can be done in many ways and crafting fairly high-fidelity prototypes and visuals was priortitised. As the visual material was on of the most important assets of this project, a decent amount of time was dedicated to creating characters and a visual language. Besides creating this visual identity early on, several prototypes were made, one which can be seen on the left.
Test and iterate
In order to determine the relevance of each of the ideas, ideas were shown to different stakeholders. Their feedback was taken into account and used to strengthen and further develop two of the ideas. Unfortunately, due to difficulties in getting in touch with children who suffer from IBD, in-depth conversations with users were not held. Interviews, workshops and discussions with other stakeholders, such as paediatricians, parents of paediatric IBD patients, experts from both product and interaction design and experts from the pharmaceutical industry, were held and used as a foundation for the determination of the relevance of each of the ideas.
Explore and define
Children around the age of 12, who generally do not like plain texts but rather visual material, form the foundation for crafting the visual identity of each of the application’s screens. Research has shown that children around this age do not like medical jargon, partly because the terminology but also because of the density of text. Several successful applications, such as Duolingo, KhanAcademy, Memorando, ClassDojo, Hopscotch, Peak and many others prove to be successful based on the increase of registered users in recent years. During the exploration phase, several experiments were done in order to find out appropriate font size and maximum of words in a screen. The previously mentioned applications formed a benchmark for this application.
Integrating insights in design framework
The design framework can be seen on the image below, where the main question is described on the left and the three subquestions directly on the right side of it. The six colourfull blocks next to the subquestions are design principles, whose are chosen based on the the idea validation and reviewed literature. The goal of creating a design framework was to critically evaluate the essence of the main question. Crafting a design framework also encourages to extend creative capabilities, as a subquestion can trigger additional thoughts. Ideating and looking in depth into the market and its users resulted in two leading design considerations.
Want to get this in the hands of a patient?
Excited to continue the development of Pling?
Currently I am looking for parties or platforms that can accelerate the development of Pling. There are lots of tasks that need to be done before this app can be launched. If you are or know someone who wants to improve health literacy as much as I do, feel free to reach out to me and send an email to firstname.lastname@example.org