Innovating cleft care from the patient’s perspective : by using design thinking.

Amsterdam Business School

Master thesis Entrepreneurship & Innovation

Innovating cleft care from the patient’s

perspective

By using design thinking

Abstract

This thesis describes the first stage of the REdesign project that is conducted by the REshape and Innovation Centre of the UMC Radboud hospital. Tools were explored from the approach of service design thinking which focuses on the patient perspective. Not once this approach was taken before

in this hospital and valuable insights were collected for improving the delivery of cleft care. The result of the first stage was the formulation of the aspired value of patients: clear communication

throughout the whole process of care delivery and positive motivation. The most important moments for improving communication were identified.

Colophon

Student

Name: Isabella Aronds

Student number: 5944414

E-mail: iaronds@gmail.com Study: Master Business Studies

Specialization: Entrepreneurship & Innovation Assignment: Master thesis

Date: 17 april 2014

Instance: University of Amsterdam Faculty: Amsterdam Business School Address: Plantage Muidergracht 12

1018 TV, Amsterdam

Supervisor

Table of contents

Introduction p. 5

UMC Radboud and Reshape p. 5

REdesign Project p. 5

Main question thesis p. 5

Objectives p. 6

Approach p. 6

Structure p. 6

Part 1: Theory 1.1 Context

1.1.1 Dutch healthcare system p. 7

1.1.2 Hospital structure p. 8

1.1.3 UMC Radboud structure p. 8

1.1.3.1. UMC Radboud Mission p. 9

1.1.3.2 Multidisciplinary teams p. 9

1.1.4 Contribution p. 10

1.2 Research approach

1.2.1 Design thinking p. 10

1.2.2 An example of design thinking p. 10

1.2.3 Service design thinking p. 11

1.2.4 Principles of service design thinking p. 12 1.2.5 Stage model service design thinking p. 14

1.2.6 Service design and healthcare p. 15

1.2.6.1 Extern sources p. 16

1.2.6.2 Intern sources p. 16

1.2.6.3 Advantages and disadvantages p. 16

Part 2: Methods

2.1 Understanding the context p. 19

2.1.1 Observations p. 19

2.1.1.1 Psychical room p. 20

2.1.1.2 Interaction p. 20

2.2 Understanding the patients perspective p. 20

2.2.1 Patient blogs p. 20

2.2.1.1 Purpose p. 21

2.2.1.2 Strategy p. 21

2.2.2 Patient journey mapping p. 21

2.2.2.1 Strategy selecting patient’s p. 22

2.2.2.2 Adoption and genetics p. 22

2.2.2.3 Selecting patient’s p. 23

2.2.2.4 Preparing journey mapping p. 23

2.2.2.5 Strategy journey mapping p. 23

2.2.2.6 Template p. 24

2.2.2.7 Ethics p. 24

2.3 Understanding the cleft care team p. 24

2.3.1 Stakeholder maps p. 24

2.3.1.1 Interviews p. 25

2.3.2 Workshop patient journey mapping p. 25

2.3.2.1 Strategy p. 25

Part 3: Analysis & Results

3.1 Analysis p. 27

3.1.1 Data reduction p. 27

3.1.2 Data display p. 27

3.1.3 Conclusion drawing/verification p. 27

3.2 Results p. 28

3.2.1 Observation and contextual interviews p. 28

3.2.1.1 Front desk p. 28

3.2.1.3 Waiting room p. 29

3.2.1.4 Main insights p. 29

3.2.2 Patient blogs p. 30

3.2.2.1 Reducing and displaying data p. 30

3.2.2.2 Main insights p. 30

3.2.3 Patient journey mapping p. 31

3.2.3.1 Personas p. 31

3.2.3.2 Journey map p. 32

3.2.3.3 Main insights p. 34

3.2.4 Stakeholder map/Interviews cleft care team p. 34

3.2.4.1 Main insights p. 35

3.2.5 Workshop patient journey mapping p. 35 3.2.5.1 Comparison between two maps p. 36 3.2.5.2 Comparison with actual patient journey p. 36

3.2.5.3 Main insights p. 36

3.3 Conclusion p. 37

3.3.1 Communication p. 37

3.3.2 Most important moments p. 37

3.3.3 Answering the main question p, 38

3.4 Discussion p. 39 3.4.1 Objectives p. 39 3.4.2 Limitations p. 39 3.5 Advice REshape p. 40 3.5.1 Process description p. 40 3.5.2 Advice p. 41 3.5.3 Dream stage p. 41 References p. 42

Appendix 1: Data display observations p. 44

Appendix 2: Data display Patient Blogs p. 46

Appendix 3: Important parameters selecting patients p. 49

Appendix 4: Patient journey maps p. 50

Introduction

Opportunities and challenges in healthcare are enormous at this moment. Multiple factors like technology, raising costs, the calculated patient demand of the future and the shrinking of the working population, play leading roles in healthcare’s changing environment (D’Escury & Alma, 2011). To keep up with the changing environment, hospitals have to provide more efficient, flexible and transparent care. Innovation is one way to achieve this.

UMC Radboud and REshape

The UMC Radboud Hospital situated in Nijmegen is one of the pioneering hospitals of the Netherlands. They have incorporated innovation inside their hospital through a special program called REshape. REshape is aimed at improving healthcare by nurturing innovations in projects and embracing the patients and their family into the healthcare team (Radboud 2013). The overall mission of the hospital is to have a significant impact on healthcare. They want to achieve this by delivering person-centred care, delivering demonstrably distinctive quality, through sharing knowledge in professional networks and by using resources effective and efficient.

REdesign Project

The UMC Radboud mission has great potential but in practice the hospital is still structured around the professionals instead of the patients. Therefore the board of directors asked REshape to find a way to translate the hospitals mission to the practice. In response to this request REshape started the REdesign project. The goal of this project is to embrace the patient’s perspective and use this knowledge to innovate and/or improve the hospitals delivery of care. The project concerns the whole hospital and therefore REshape has chosen to focus on multidisciplinary teams that consist of specialisms from different departments of the hospital. Strategically multidisciplinary teams are the most efficient way to reach all professionals of the hospital. The first team that participated in the REdesign project was the cleft care team. Their motivation to participate was that the team wants to become the best-cleft care team of the Netherlands.

Main question thesis

The main question of this thesis is:

“How can the delivery of cleft care in the UMC Radboud hospital be improved from the

patients’ perspective?”

By ‘the delivery of cleft care’ is meant the actual care the patients receive from the cleft care team. For this part of the question it is important to know which care is delivered and how. The question then states ‘improved’ to indicate that the expectation is at least to improve the delivery of care. At last the question states ‘the patients perspective’, which is the focus

of this thesis. Too often the perspective that is taken to innovate or improve care is based on the organization itself instead of the patient.

Objectives

This question is important for REshape and the UMC Radboud Hospital because it is line with their mission and because listening to what patients actually need and want, and learning from their experiences is very precious and valuable information of which not much is known from yet. Indented with this thesis is to explore and develop tools that can be used for capturing the patients’ perspective. The objectives of this thesis are:

1. To understand and describe the patient perspective and aspired value 2. To provide valuable insights that can improve the delivery of cleft care 3. To develop a service design thinking approach in a hospital context

Approach

The approach of this thesis is service design thinking, which is a creative and practical technique for solving problems (Stickdorn & Schneider, 2013). The emphasis lies on designing a new or improved service where all stakeholders are involved in the design process. The focus of service design thinking is on the users of the service, which makes it the best approach for this thesis. The design process consists roughly of four stages; the first is called exploration and is where the patient’s experience is explored and his/her needs are identified. The second stage is creation where ideas and concepts for improving the service are created. The third stage is about reflection of the formed concepts and the last stage is about implementing the improved or new service (Stickdorn & Schneider, 2013). In this thesis I only focus on the first stage, exploration, which is the basis of the whole design process.

Structure

The structure of this thesis is as follows. First the context of healthcare in the Netherlands is described and the mission and vision of the UMC Radboud explained. Second the research approach, service design thinking, is reviewed; this contains a description of the main

principles of service design thinking and ends with a conceptual model guiding the first stage of the design process. Next the research methodology is described and the analysis and results are explained. The thesis ends with a conclusion in which the main question is answered, a discussion about the thesis as a whole and an advice for the UMC Radboud about how to continue the REdesign project for cleft care.

Part 1: Theory

For improving the delivery of care it is important to have a deeper knowledge of the current healthcare structure. In this section the context is sketched, beginning with the Dutch healthcare industry and zooming in on the UMC Radboud hospital.

1.1.1 Dutch healthcare system

The Dutch minister of healthcare is called the current most powerful women of the

Netherlands (Opzij, 2013). What makes her position so powerful you might ask. It is because economically speaking healthcare in the Netherlands is growing quicker then the gross domestic product. Even with the financial crisis, healthcare keeps growing. The healthcare sector grows because we want more care and because it becomes more expensive as more complex diseases can be treated (D’Escury & Alma, 2011). Innovations as wearable

technology like Google glass, robot arms for accurate surgery and 3D printed biological materials are ones that need expensive investments (Honigman, 2012). Healthcare is not only the greatest expenditure but also the greatest employer of the Netherlands. The health sector is thus a very important factor for the Dutch economy. According to the National Institute for Public Health and Environment, healthcare needs 450.000 more jobs or 300.000 more working hours in 2030 to keep up with the patient demand of the aging people. And this while the working population is assumed to shrink with 500.000 people by 2030. There needs to change something in healthcare to keep up with the long-term demand (D’Escury & Alma, 2011). It is this challenge that keeps every sector in healthcare on top of the game.

In the Dutch healthcare system the general practitioner (GP) is seen as the gatekeeper of care. He or she is the starting point for every disease and refers patients to specialists (Bakker & Groenewegen, 2009). When someone needs specialists care this person is dependent of the choice of the GP in referral. According to a survey among the Dutch population 66% of the respondents finds the GP very important for their choice of healthcare. But according to a survey among GPs, 40% does not compare healthcare providers before referring patients. Instead they refer according to location or network (D’Escury & Alma, 2011). This is a very important finding since it indicates that patients cannot trust their GP to refer them to the best care possible for their disease. Patients have to investigate themselves, which care provider best meet their needs. The care provided in the Netherlands, especially in hospitals, is good to excellent. This means patients can base their choice for care provider also on different factors. Unfortunately complaints and patient satisfaction are not published and recorded by hospitals in the Netherlands anymore

(D’Escury & Alma, 2011). This makes it harder for patients to compare specific care among different care providers. In 2013 some hospitals made a big step into transparency, for example the UMC Radboud Hospital in Nijmegen made the survival rates of lung cancer

public (Effting, 2013). Quality and transparency are therefore becoming even more important then before in providing specialists care. Therefore organizations in healthcare have to provide more efficient, flexible, transparent and higher quality care, to keep up with the changing environment.

1.1.2 Hospital structure

Hospitals are one of the oldest forms of organizations and can be seen as service oriented. There is a division between peripheral hospitals, categorical hospitals and academic hospitals. Peripheral hospitals are scattered around the Netherlands, are small in

comparison to academic hospitals and see a lot of patients for non-complex treatments. Categorical hospitals are specialized in one category of patients for example an eye hospital or children’s hospital. The academic hospital is big and connected to universities with a medical faculty. Their main tasks are to contribute to scientific research and education, delivering specialized patient treatments and providing education programs (Wulff, 1996). The organizations structures among hospitals can be very different and complex. What all Dutch hospitals have in common are that most medical specialists are not employees of the hospital but are working in partnerships according to their specialism. They work in the hospital on the basis of an admission agreement (Wulff, 1996). Almost always there is a board of directors that manages the hospital. This board of directors can consists of business specialists and/or medical specialists and manage the different services the hospital provides (Wulff, 1996). These services can be support services like administration and technical services, medical services like diagnosis and treatment and other kind of services necessary for the functioning of a hospital. The organizational structure of hospitals has changed in little steps over the past years, but the main structure is still the same as twenty years ago.

1.1.3 UMC Radboud structure

When we look at the academic UMC Radboud Hospital in Nijmegen, their organizational structure is very complex as it is a big hospital. The concern staff, board secretariat and participation- and advisory counsels, report to the board of directors. The board of directors control the extern clients like education, science and patient care while also controlling the intern clients, which are the intern departments. All medical and non-medical staff that is not reporting to the board of directors has influence on the primary process by influencing either the extern or intern clients.

Figure 1: Organogram of UMC Radboud

1.1.3.1 UMC Radboud mission

The mission of the UMC Radboud is to have a significant impact on healthcare. The UMC Radboud states there is a need to develop innovative, sustainable and payable healthcare that is still maintainable in fifty years. They want to be in the forefront of this development because of their drive and vision to provide good and human-centred care. In order to obtain their mission they want to take five steps. The first step is to address problems in the patient care and to order the organizational, administrative and financial tasks. Since this step is already taken it are the next steps that need attention. The step they want to take now is to see the patient as a partner inside the treatment team by adjusting the diagnosis and treatment plans on the specific characteristic of the patient, which is called person-centred care. The next steps are to deliver demonstrably distinctive quality regardless of domain or function, collaborate and share knowledge in professional networks and by using resources in an effective and efficient way. The intention of these steps is that the hospitals staff and specialists take these steps themselves. Unfortunately it seems that this is not happening (yet). Therefore the board of directors is looking for ways to translate their mission and vision to the primary process.

1.1.3.2 Multidisciplinary teams

Since the first step of the UMC Radboud is to have patient-centred care, multidisciplinary teams can be best used to set an example for the rest of the hospital. In these teams work multiple different specialists, which allows information to spread quicker to the different departments of the hospital. Multidisciplinary teams are part of integrated care. Integrated care is one way to structure the delivery of care in an efficient and person-centred manner for one disease. It is a coherent way of structuring the care of the patients with different health providers inside and outside the hospital. Inside the hospital there is a

multidisciplinary team that consists of several specialists from different departments that coordinate the care (Handreiking ketenzorg 2013). The chain from first symptom, diagnosis,

different treatments, controls until end of treatment are coordinated by this team and can take place inside or outside the hospital. Disadvantages of this type of care might be that it takes time and money to set up a multidisciplinary team and takes even more time to make sure the communication between all specialists inside and outside the hospital is going smoothly. Advantages are that the patient doesn’t have to go to different specialists inside the hospital, but can see all the specialist of the team in one appointment. It is also possible to be treated outside the hospital, which can be convenient as this might be closer to patient’s homes. At last it is possible to use the hospitals resources efficient and effective by using multidisciplinary teams. Besides it makes it possible for specialists of different

departments to share knowledge and use professional networks inside and outside the hospital.

1.1.4 Contribution

The Dutch healthcare system is subject to a changing environment. Patients will make their own choices in specialist’s care, which forces hospitals to deliver more transparent, efficient, flexible and higher quality care. With this thesis I hope to contribute to the design thinking literature by using service design thinking in a hospital context. Second I hope to contribute to the UMC Radboud by developing and exploring tools to translate the hospitals mission and vision to the practice. At last I hope to contribute to healthcare by obtaining insights from the patient’s perspective to improve the delivery of healthcare in a sustainable way so it can keep up with the changing environment.

1.2 Research approach

1.2.1 Design thinking

Design thinking originates from engineering where the actual designing, for example of products or houses, takes place. Like the name says it is a way of thinking that is adapted by organizations that have trouble dealing with open and complex problem situations (Dorst, 2011).There is a lot literature written about design thinking, however one common definition is not available. When dealing with a challenge or complex problem in design thinking, the only thing that is known for sure is the value to obtain. This aspired value is what the customer(s) would value instead of what the organization would value.

Experienced designers have efficient strategies come up with solutions for complex

problems. One such a strategy can be to develop or adapt a frame (Dorst, 2011). The frame is the working principle to get to the aspired value. A frame can be something like: IF we look at the problem or challenge from this perspective, THEN we will obtain the aspired value (Dorst, 2011).

1.2.2 An example of design thinking

In a city like Amsterdam there are many areas where young people go clubbing. On one particular square there is a problem situation. This square contains of numerous bars and

clubs and attracts about 30.000 young people on a Saturday night. The problems that are encountered are drunkenness, fights, theft, drugs dealing and sporadic violence. The local government has tried to deal with this problem by increasing the police presence, forcing clubs and bars to hire security personnel and by putting security camera’s on every corner. All this extra security has not changed anything and the problems persisted. In order to solve this problem a design team was hired. This design team quickly realized that the local

government had framed the problem as a law and order problem for which law and order solutions were applied. The design team had chosen a broader scope and started to study the behaviour of the people going to the square in detail. Key themes that emerged were that the people concerned were young people, non-criminal which just wanting to have a good time, and they get extremely bored and frustrated as the night progressed. It seemed the people were not getting a good time at all and the extra security measures had only increased their bad experience. Therefore the design team has chosen to frame the situation as IF they were organizing a good-sized festival where the people only wanted to have a good time (=aspired value). This frame leads to the question: what would one do IF organising a good-sized festival? This frame generated multiple design directions. One design direction was for example that there needed to be enough transportation, people must be able to get there and leave easily at peak time. Another design direction is to

control the crowds by making sure people are not depended on what happens in a single bar or club and also have a good time while chilling outside by making sure toilets are available and stand where one can buy drinks and food. This example shows that an open and complex problem can be approached in an original manner by investigating the people concerned and creating a frame according to the actual findings (Dorst, 2011).

The focus on the aspired value can be seen as a solution focussed mind-set instead of a problem focused mind-set, and is one of the things that makes design thinking different from other problem solving methods (Razzouk & Shute, 2012). The definition used in this thesis is therefore that design thinking is an open form of reasoning that can solve complex problems in a practical and creative way (Stickdorn & Schneider, 2013).

1.2.3 Service Design Thinking

Since design thinking is mostly about designing a product, service design thinking is used to specify the design of services only. However now the question arises, what are services? Vargo and Lusch (2004) suggest that everything is a service. Design used to be about form, function, material and production but this has changed. Nowadays design is focused on how people and technology interact with each other while products serve as platforms for experiences (Buchanan, 2001). Therefore it might be possible to say that service design thinking is about designing experiences.

1.2.4 Principles of Service design thinking

There are some leading principles that guide service design thinking (Stickdorn & Schneider, 2013). 1. User centred 2. Co-creative 3. Sequencing 4. Evidencing 5. Holistic

 Principle 1: User Centred

By user-centred is meant that the emphasis is on the customer that uses the service. Seeing the service through the eyes of the customers makes it that the designer can have a deep understanding of the customer desirability (Stickdorn & Schneider, 2013). Desirability is important for designing services, and consists of utility, usability and pleasurability. Utility are the functional benefits that the service offering has. In order to score high on utility, you have to understand what your customer really needs. Utility can be seen as the basic value the service needs to meet. Usability is about how easy the basic value is obtained when using the service. For example a website structure is best when it is structured according to the customers expectations of the structure. At last pleasurability is important in designing services, it is about how the service makes the customer feel (Clatworthy, 2013). Desirability is an important part of the customer experience. The customer experience is a special kind of knowledge, which is acquired from close and direct personal observation or contact with the service or other feature of the organization. This knowledge is expressed in what a person thinks, feels and says about his interaction with the service (Bate & Robert 2006). Therefore it can be stated that in order for a customer to have a great experience first the basic needs (utility) must be met, then the expectations (usability) and at last but not least a positive feeling and experience must be the result (pleasurability).

Figure 2: Desirability

Often the customer interacts with the service provider in multiple indirect and direct moments. These are called customer touch points. This can be through human interaction, using the services, being in the space of the organization or by using the organizations

Desirability

Utility

Usability

Pleasurability

website and/or social media. It is the experience the customer has of each of these

moments that makes the whole customer experience (Dhebar, 2013). One important aspect of the user-centric principle is that there can be multiple customer groups. Since services are created through customer and service provider interaction, it is important to now how to meet the needs of the particular customer groups (Stickdorn & Schneider, 2013). It can take quite some time to understand the interactions customers have with the service, but it is very important to view the service through the customer’s eyes. Only then it is possible to design the service in a valuable matter for the customer (Clatworthy, 2013).

 Principle 2: Co-creative

By co-creative is meant to create a service in cooperation with all stakeholders (Stickdorn & Schneider, 2013). Co-creation facilitates all stakeholders to add value to the service design during the design process. The stakeholder can be the customer, frontline, back-office staff, management or any other person that has to do with the service. Besides adding knowledge and creativity, the stakeholder’s engagement will also grow. The more the staff gets

involved, the more likely it is that the staff will feel co-owner of the new or improved

service, which can result in more loyalty and engagement (Stickdorn & Schneider, 2013). The new or improved service therefore has more chance to be sustainable.

 Principle 3: Sequencing

Sequencing can be seen as a visual arrangement of important points of interaction between the service and the customer. Services are dynamic and take place over a period of time. Customers are very sensitive to the rhythm of services. If there is too much time between the services, customers might get bored or angry. If there is to little time between services, customers might become stressed. When thinking about the services and the time line, it is possible to define service touch points and sequence these touch points accordingly

(Stickdorn & Schneider, 2013).To understand the customer experience, means to capture rich information across all customers touch points with the service provider and even other service providers that might be of importance (Texeira et al. 2012). When laying these touch points next to each other it is possible to visualize the rhythm of the whole service (Stickdorn & Schneider, 2013) and find improvements for designing the services.

 Principle 4: Evidencing

Evidencing is making the intangible services a little tangible. Services are intangible and therefore the customer cannot notice all services. Physical evidence such as the folder toilet paper role in a hotel room can make the customer aware of the housekeeping service of hotels. Even though the housekeeping service is designed to be inconspicuous (Stickdorn & Schneider, 2013). It is therefore importance to know which services the customer would like to have a little tangible and which not. This can be derived from customer’s experiences. For example a sign next to the electric hand dryer in public toilets that says that the organization knows some customers prefer paper towels but it is better for the environment and

therefore have chosen for this. Although some customers might find it bothersome it also generates empathic engagement (Stickdorn & Schneider, 2013). Letting the customers have a better understanding of the backstage services can lead to a better customer experience

(Stickdorn & Schneider, 2013).

 Principle 5: Holistic

The last principle is where all the principles come together. Holistic means to consider everything that might be important for designing the service. This can be the perspective of the service provider or the perspective of the customer (Johnston & Kong, 2011). Therefore the context is very important in this last principle. According to Zomerdijk and Voss (2010) the context is the most important factor creating the customer experience. The context includes the physical setting, social actors and any interaction with other customers and/or service facilitators. They found that through the context, engagement and emotional connections could be intensified. Sensory design, which includes the five senses (sight, sound, smell, taste, and touch) are crucial for the design of tangible elements of experience-centric services (Zomerdijk & Voss 2010). But as customers don’t normally visit an

organization for an excellent customer experience, it is important to keep their purpose in mind. ‘People visit these places and spaces because they have a certain mission they want to accomplish’ (Dhebar, 2013, p.204). Excellent customer experience will not be satisfying if customers cannot meet their need(s). ‘What a customer ultimately seeks from an enterprise is value’ (Dhebar, 2013, p.204).

1.2.5 Stage model of service design

Structuring a design process is difficult to standardize because designing services is a non-linear process. Even though, it is possible to describe an iterative stage model. An iterative stage model is a very basic structure for the design process in which every stage is not fixed. Therefore it is possible to take a step back or start all over again. Most important is to ensure that everybody involved in the design process has learned from what has happened (Stickdoorn, 2013). A possible design process consist of four stages; exploration, creation, reflection and implementation. These four stages include of the five principles stated before.

Figure 3: Service design stage model

Stage 1 Exploration Stage 2 Creation Stage 3 Reflection Stage 4 Implementation

Stage 1. ‘Exploration’ is about understanding the current situation from the perspective of all customers. This stage is therefore user-centred (Stickdoorn, 2013) and very important for finding what the aspired value of the customer is. When paying closer attention to a

customer, the designer is able to see the needs of the customers are even if the customer is not aware of them (Liedtka & Ogilvie, 2011). It is important to make sure everything that might be important for the customers experience is captured. Therefore the context and all stakeholders involved should be explored in this first stage. Only then a real understanding of the customers experience with the service can be achieved and the aspired value of the customer can be identified.

Stage 2. ‘Creation’ is about creating ideas and concepts and exploring the possible mistakes that can come along with them (Stickdoorn, 2013). The information found in the exploration stage is used as a starting point for idea generation to improve and/or innovate the

customer experience and leads to formulating concepts (Liedtka & Ogilvie, 2011). In this stage it is important to include all stakeholders so they can contribute value to the design process (Stickdoorn, 2013).

Stage 3. ‘Reflection’ is about imagining the service concept in a visual way and to discover the concepts strengths and weaknesses (Stickdoorn, 2013). It is about testing assumptions of the concepts that are made during the creation stage. After this stage the best concepts can be identified and be taken into the last stage (Liedtka & Ogilvie, 2011).

Stage 4. ‘Implementation’ is about implementing the new or improved service in the system (Stickdoorn, 2013). This stage is not about piloting the new service but still about co-creating the new service with customers. The first contact between customers and the service is still part of the design process (Liedtka & Ogilvie, 2011). To make sure the new or improved service is a success, all stages also include change management as the motivation and

engagement of all stakeholders is crucial for sustainable service implementation (Stickdoorn, 2013).

1.2.6 Service design and healthcare

Healthcare may sound very unrelated to the world of design, but these very different groups of professionals have one thing in common. They both have the aim of making it better for the user (Bate & Robert, 2006). Therefore the approach of service design thinking is very suitable for healthcare research, as it makes sure the patient comes first. Most hospitals respond to complex challenges through cost saving or optimization processes while they could broaden their repertoire of strategies by adapting service design thinking (Dorst, 2011).

1.2.6.1 Extern sources

Service design thinking has already been applied in healthcare, mostly in the United States and Canada, and interesting cases are written about it. Some hospitals started collaborating with external design thinkers. For example the Princess Margaret Hospital (PMH), one of the worlds best cancer research hospitals, wanted to redesign the system of therapy and the facility’s involved. In order for the PMH to do so, they started collaborating with the Rotman research team, which was called the Rotman Creative Design Process (Golden et al. 2011). Another example is the case of the large health care provider, Kaiser Permanente. They wanted to improve the quality of both patients and practitioners experiences. In order to do so they thought their staff design thinking techniques and hoped to inspire them to bring in new ideas. The workshops the in which the practitioners participated in were organized by IDEO, which is a design and innovating consulting firm. The workshop consisted of a core group that consisted of a strategist, organization-development specialist, technology expert, a process designer, a union representative and designer from IDEO. This core group

collaborated with nurses to identify a number of problems. One problem identified was the way the nurse shift change occurred. The main problem of these shift turns was that a great deal of information about the patient was lost. According to the patients ‘each shift change felt like a hole in their care’ (Brown, p.2, 2008). After one week a working prototype was created, a simple software in which shift-change notes were recorded. During this short workshop the practitioners of Kaiser Permanente learned to apply a human-centred design methodology for identifying and solving problems (Brown, 2008).

1.2.6.2 Intern sources

Besides using extern sources other hospitals have started their own design thinking

innovation center. For example the Mayo Clinic, department of Medicine, started a program ‘to systematically innovate in the delivery of health services’ called the SPARC innovation program. This program combined designers, business professionals, physicians and other medical staff together to solve problems using human-centred design methods (Duncan & Breslin, 2009). Continuing projects are stared and workshops given.

1.2.6.3 Advantages and disadvantages

Hospital like PMH, Kaiser Permanente and the Mayo Clinic, wanted to redesign and innovate their care system, so they adapted service design thinking either through extern or intern sources. A great advantage of the using extern sources are that experiences designers can teach the practitioners how to use design methodologies. A disadvantage could be that the hospital becomes dependent of collaborating with IDEO and the Rotman team. An

advantage of using intern sources was that it allows designers to understand project outcomes in ways consulting design expertise cannot. Besides it gives designers access to patients and their experience that they would otherwise did not have access to as it takes time to build a confidential relationship with the practitioners and patients (Duncan & Breslin, 2009). Overall there is no right or wrong in this case. Working with design consulting

firms for understanding the design methodologies and principles might be a great start for setting up an intern design department.

1.2.7 Conceptual model

The REshape program of the UMC Radboud can be seen similar as the SPARC innovation program. Both are internal programs that facilitate innovation inside the hospital. The REdesign project which objective is to translate the hospitals mission of person-centred care to the practice is structured according to the four stages of service design thinking

(Stickdoorn, 2013). It is the first stage, exploration, where this thesis is about.

In the first stage the actual delivery of care is studied through using multiple methods. At the end of this stage it is possible to identify the aspired value of the patients and create a design frame according to the findings (Dorst, 2011). This stage is very critical because the direction of the whole design process depends on it. To make sure everything is captured that might be important for designing the service this study explores: 1. the patient perspective, 2. the context of the care delivery and 3. The perspective of the

multidisciplinary team.

Figure 4: Conceptual model

Stage I Exploration

Understanding

the context

Understanding the

patients perspective

Understanding the

multidisciplinairy team

1. The patient perspective

The patient perspective consists of the patients’ desirability (Clatworthy, 2013). Therefore utility, usability and pleasurability are important factors to focus on. The most important patient need is hypothesized being: to receive high quality care and thus heal whatever is wrong in the best possible way. Since the care provided in the Netherlands, especially in hospitals, is good to excellent (D’Escury & Alma, 2011) it are the expectations that patients have of the care (usability) and the actual patient experience (pleasurability) that are where improvements might be desired most (Bate & Robert, 2006).

2. The context

When studying the actual delivery of care it is essential to know which care is delivered where. Therefore the context is important. The context consists of the physical setting and social actors, which includes any interaction between patients and/or the multidisciplinary team (Zomerdijk & Voss 2010). Understanding the context might help to understand both the perspectives of the patients and the multidisciplinary team more deeper.

3. The multidisciplinary teams perspective

At last the perspective of the multidisciplinary team that delivers the care is important. The team is the one that has to deliver the new or improved service at the end of the project. Therefore it is essential that the perspective of each of the team members is explored. This includes mapping the structure of the team, relationships and individual motivation for being part of the team (Duncan & Breslin, 2009).

Part 2: Methods

The research took place at the cleft care department. People with a cleft of the lip, palate and/or jaw are born with it. The treatment of cleft patient’s starts from the diagnosis, which is most of the times during pregnancy and ends when the patient is an adult, around the age of 20 years. Despite the child having the actual cleft, it are the parents that can be seen as the patient as well especially in the first years, as they have to make the decisions about whether to operate or not. The cleft care team working in the UMC Radboud hospital is a multidisciplinary team containing paediatrics, plastic and reconstructive surgery,

orthodontics, genetics, social work or nursing, ENT, speech therapy, maxillofacial surgery, prosthetic dentistry, psychology and oral hygiene (Kuipers-Jagtman, 2000). The cleft care policlinic, the cleft patients and the cleft care team are the focus of this research. The methods described below are therefore summarized accordingly.

Figure 5: tools summarized

2.1 Understanding the context

In order to understand the context secondary data was reviewed. This consisted of collecting information that was already available; the patient database, academic and non-academic articles concerning cleft care and websites about cleft care. The information found from the secondary data was used as a basis for all other methods used.

2.1.1 Observations

Every Thursday morning there is a cleft consultation hour in the hospital at the dental departments policlinic. Cleft patients and their family are scheduled for this consultation hour for intakes, before and after surgeries and for interim inspections. Using observations gives a better understanding of the culture, nonverbal expressions and feelings actually perceived in the context (Kawulich, 2005). I chose to observe at these hours because it is the

• Secondary data

• Observations & Contextual Interviews

Understanding the

Context

• Patient blogs

• Patient journey mapping

Understanding the

patients

perspective

• Interviews cleft care team • Patient journey workshop

Understanding the

cleft care teams

perspective

only time the cleft team is together and interacting with the patient and their family. To limit the subjectivity there were two people observing. To make sure the quality of the

observations were high, the focus was on two predefined points while still being open for surprising elements:

1. The physical rooms, and

2. Interaction between patients in the waiting room.

2.1.1.1 Psychical rooms

The observation began when traveling to the policlinic and ended at 12pm when the

consultation hour was over. The first hour the observers specifically focussed on the physical rooms and observation of the patients and their family waiting. The psychical rooms

contained of the front desk, the waiting room and the treatment room. During observation the observers stayed in the waiting room because they were not allowed in the treatment room and front desk as these rooms were filled with too many people. The observers did get a chance to look at all the psychical rooms for some minutes and made notes of the

structure, look and feel of the rooms. The presence of the observers in the waiting room was both known for patients as well as specialists because we introduced ourselves. It is

important to keep the observer effect in mind, which is the effect that might occur because the patients and specialists knew observers were present (Kawulich, 2005).

2.1.1.2 Interaction

The second hour the observers focussed on the interaction between patients and the multidisciplinary team. Besides listening to what patients said to each other in the waiting room another method was used. Contextual interviews are interviews conducted in the context of the service. This method allows the interviewer to understand the context of what is being said and can help the patient to remember specific details of the service that can get lost in another setting (Stickdorn & Schneider, 2013). By using this method it is possible to have a deeper understanding of the patient experiences. It is important to note that the observers only spoke to the patients during their time in the waiting room and not after they came back from the treatment room. Patients were asked about the consultation hour and the psychical room while they were waiting in the waiting room. The anonymity of all people involved was preserved; therefore notes were made in a way that nobody could identify whom was written about.

2.2 Understanding the patients perspective

2.2.1 Patient blogs

Blogs are a way of self-presentation by frequently post stories that are ordered

chronologically on a website. They are publicly available and a low-cost technique to collect experiences from patients (Hookway, 2008). Furthermore they are not biased to the

more open in their posts than other bloggers. It is crucial to question the trustworthiness of a blog. How do you know if someone is honest in his or her posts and how do you know the information is suitable for this research. As it is never possible to know if someone tells the truth, even with face-to-face interviews, it is important to focus on the purpose for

researching the blogs (Hookway, 2008).

2.2.1.1 Purpose

In the case of this thesis the purpose of reviewing patient blogs is to understand the

experiences and the life with a cleft. Some blogs consisted of short messages written at the time the patient or parent needed to share a specific moment. Other blogs consisted of a longer message describing different important moments in once. Most blogs contained messages that go years back, while other blogs are just starting or already stopped. By reviewing these different messages in the different blogs it is possible to have a deeper understanding of the important moments in living with a cleft.

2.2.1.2 Strategy

It was preferred to only use the patient blogs from the cleft patients of the Radboud but as there was not enough data available a different strategy was chosen. Two people started searching for non-anonym blogs on the Internet. The strategy was to Google the following words in Dutch: experience with cleft, cleft and synonyms for cleft. According to the first post the relevance of the blog was determined. We hadn’t specifically chosen to focus only on blogs written by parents but the result was 10 blogs written by parents of a child with a cleft. Eight out of the ten blogs were public available, except the two blogs of the UMC Radboud community. Therefore and because no consent was asked to the bloggers, the blogs were made anonym so no one could find out who wrote what.

Table 1: Blogs origin

Kind of Blog Number

Blogs UMC Radboud Community 2

Blogs schisis.com 4

Blogs with own website 4

2.2.2 Patient journey mapping

To be able to understand the patients’ perspective it is important to talk to the patients. While this was done during the contextual interviews as well, there was not much time to talk about the patients experience with the cleft care. Therefore it was chosen to have a deeper conversation with the patients and to simultaneously visualize their experience through journey mapping. Journey mapping is a method that allows the interviewer to follow the patients experience with the cleft care from beginning to end. In this way it is possible to have a deep understanding of the patients life (Liedtka & Ogilvie, 2011). Since it was impossible to talk to all 1552 cleft patients because of time and efficiency constraints,

15 patients were selected. The patients were selected according to the demographics of the patient database (table 2).

Table 2: Demographics cleft patients UMC Radboud

Gender Age Kind of Cleft

60% male 7% = 31years or older 14,5% = UCLA

(one sided clefts of the lip and alveolus) 40% female 6% = between 26 and 31years 28% = UCLP

(one sided clefts of the lip and palate) 10% = between 21 and 26years 1% = BCLA

(two sided clefts of the lip and alveolus) 17% = between 16 and 21years 13% = BCLP

(two sided clefts of the lip and palate) 21% = between 11 and 16years 14% = Only cleft of the palate

22% = between 6 and 11years 29,5% Other

17% = between 0 and 6years

2.2.2.1 Strategy in selecting patients

A selection was made according these demographics because there are some differences in the treatment plan of these different groups of cleft patients. Patients who only have a cleft in the lip don’t have to be treated as long as patients who have both clefts in the lip and palate. Patients with only a cleft in the lip have to undergo 1 or 2 surgeries, while patients who also have a palate cleft need far more surgeries and speech treatment. Patients who only have a palate cleft often have other congenital deviations and thus follow a whole different treatment path. These differences in treatment plan are important for making a representative selection of the patients for the journey mapping. Besides these

demographics there are some other important factors to keep in mind.

2.2.2.2 Adoption and genetics

There are a lot of adopted children with a cleft. Some of these adopted children have already undergone surgeries in their original country while other had their first surgery in the Netherlands. Another important factor is genetics. Cleft can be genetic and therefore a difference must be made between those families who already consist of someone with a cleft, and those families for which it is not genetic. The difference between these two families is that genetic families have far more knowledge about clefts than families who never had experience with it before. When researching the secondary data of websites about cleft care and patient blogs these important factors of adaption versus not adopted and genetics versus not genetic were returning patterns. It also appeared important to

broaden the definition of patients to not only the cleft patients themselves but to their direct family as well. A cleft is mostly diagnosed during the 20weaks ultrasound or shortly after the childbirth and thus the direct family has to make the decisions for the cleft patients the first several years. The experience of the direct family is therefore at least as valuable as the experience of the cleft patients themselves.

2.2.2.3 Selecting patients

The patients were selected according to two main categories ‘adopted’ and ‘not adopted’, with the subcategories of ‘genetic’ and ‘not genetic’ in the not adopted category. Next all categories were divided in male and female, age and kind of cleft. The cleft care team had chosen 15 patients that fitted the description for each group the best. As the database only records the kind of cleft and age of the cleft patient they could not select on genetic versus not genetic cleft patients. In one afternoon all 15 patients were called by phone and the purpose of the project and journey mapping was explained. Of the 15 patients, 10 patients had time and were willing to participate in the interviews.

Figure 6: adopted vs. not adopted

2.2.2.4 Preparing journey mapping

By using the data found in reviewing the blogs, hypothetical journeys were formed. The hypothetical journeys were formed so the interviewers would have knowledge about possible important moments the patient has experienced, and could help the patient to remember in case they needed help in telling their story.

2.2.2.5 Strategy journey mapping

During every interview there were two interviewers, one man and one woman. The role of both interviewers was mainly to listen. The role of the woman was to write down quotes that were said by the parents and the patient. The role of the man was to help the

interviewees by drawing their journey if necessary. The interview structure was chosen to be semi-open, as we did not want to wander to far off the patient journey. All question asked were open and answers of the interviewee were summarized and if necessary further

Adopted

Not

adopted

questions where asked (Saunders & Lewis, 2012). Every interview always began with a thank you, a small introduction about the interviewers and the purpose of this project. Next a short explanation of the journey mapping was given and the interviewers always started with the same question, which was for parents: “What was the first moment that you found out your child had a cleft?” “How did you feel?”, and for children: “What do you remember from the first time you was in the hospital?” “What do you think about it?”

2.2.2.6 Template

The template of the journey map was a big white paper with only the start and end point given. The start point was the first time the parent heard the diagnosis and the end point is where the parent and/or patient is now. The template also contained coloured post-its and coloured pencils. We chose to introduce the blue post-its for important moments, which are facts. And the coloured post-its were introduced for describing the feelings of the parent (pink) and the patient (green) that go along with the important moments of their journey. All the interviews ended with the same question: “what are according to you the most

important moments of this journey?”

2.2.2.7 Ethics

The interviews were not recorded because it was believed that the interviewees would be more open to share information in this way. Ethics are very important when doing research in healthcare. Therefore confidentiality, informed consent and privacy are kept in mind. All interviews were as anonymous as possible because of the responsibility for protecting the participants (Orb, Eisenhauer & Wynaden, 2000). The cleft care team knows who was interviewed because they are the ones that provided the patients information, which was explained to the patients interviewed. The participants were told what will be done with the results and how it will be published. Quotations and other data from the interviews will be written down anonymous (Orb, Eisenhauer & Wynaden, 2000).

2.3 Understanding the cleft care team

2.3.1 Stakeholder maps

Stakeholder maps are an interesting method as it is a visual representation of all

stakeholders involved with the service (Stickdorn & Schneider, 2013). It helps to understand the relationships between the cleft care members and summarizes each member’s

motivations and interests (Liedtka & Ogilivie 2011). The aim is to have an easily accessible overview of interactions between all stakeholders that makes it possible to identify pain points and areas of potential opportunities (Stickdorn & Schneider, 2013). The knowledge about the team structure and individual motivations that is necessary for the stakeholder map is part of the whole cleft care team. Therefore interviews where chosen.

2.3.1.1 Interviews

The cleft care team inside the UMC Radboud consists of approximately 15 professionals. Since this is not a big number it was chosen to interview all members. The open interviews with the cleft care team had the form of a conversation. With every member of the cleft care team a conversation was planned of 30 minutes. Two women interviewed the cleft care team members separately. The interviews consisted of one interviewer and one member of the cleft care team. The approach of the interviews was to collect data about the team, what is going right and what they would like to improve. The conversations were confidential, not recorded and notes were described as anonymously as possible.

2.3.2 Workshop patient journey mapping

In order to get some sense of how well the cleft care team knows what the patient and his family experiences, a patient journey workshop was planned. The aim of this workshop was to find out if there is a gap between the cleft care team and the patient and if so to find out where this gap is. All members of the cleft care team were asked to participate but only eight people showed up.

2.3.2.1 Strategy

In this workshop the cleft care team was divided into two teams. Each team was situated in a different room and was asked to put themselves in the shoes of the patient and the

parents and create the journey accordingly. In order to help them empathize, a persona was made that reflected one of the patient journey maps that was created with the actual patients. This persona was the starting point for the workshop.

Persona family Hogendijk.

Esmee a girl with the age of 18 years was born with a one-sided lip, jaw and palate cleft. She lives with her parents, Henk and Patricia in a small city called Zutphen in the

Netherlands. Henk has his own company in construction and Patricia works for a home care organization for the elderly. The cleft of Esmee was diagnosed after childbirth. Esmee is now studying communications at the University and she likes to play guitar. Esmee “my dream is to play in a band and tour across Europe”. Henk and Patricia have chosen not to have more children because they already had enough concerns about Esmee. Patricia: “the moment I saw her as a baby I knew we where going into a care path”. Henk: “we have experienced a lot together. Fortunately we don’t have to go the hospital again, controls until 18 they have said”. Esmee: “it’s a pity the last control was so short”. This family talks very openly about the cleft of Esmee.

The same explanation was given to both teams as was done by the actual patients.

“The template of the journey map was a big white paper with only the start and end point given. The start point was the first time the parent heard the diagnosis and the end point is where the parent and/or patient is now. The template also contained coloured post-its and coloured pencils. We chose to introduce the blue post-its for important moments, which are facts. And the coloured post-its were for describing the feelings of the parent (pink) and the patient (green) that go along with the important moments of their journey. All the interviews

ended with the same question: “what are according to you the most important moments of this journey?”

Besides the team there was one person present to help them when they wandered to far of and kept reminding them to empathize in the patient and the parents. After 1 hour both teams had drawn a map. In the end two maps where made and explained by the groups.

Part 3: Analysis & Results

By using the methods as described above, narrative data was produced that included notes, quotes, maps and interview summaries. Analysis and interpretation are necessary for bringing order and understanding of the data, which requires creativity, discipline and a systematic approach (Taylor-Powell & Renner, 2003). The analysis of data was divided in three phases:

1. Data reduction, 2. Data display,

3. Conclusion drawing/verification.

3.1.1 Data reduction

With data reduction is meant the reduction and transformation of the raw qualitative data without pulling the data out of context (Miles & Huberman, 1984). When starting data reduction it is important to get to know the data and consider the quality and limitations of the data collected. The different kind of collected data can be analysed by choosing a focus, which can be a question, topic, period or case, individual or group (Taylor-Powell & Renner, 2003). One possible way to reduce data through focusing on groups is by making personas. They are a way of embodying actual patients perceptions of hospitals services. Personas consist of multiple groups of patients the hospital is interested in. The personas themselves might be fictional but the underlying story is real for that particular patient group (Stickdorn & Schneider, 2013). The strength of this focus lies in the empathy all stakeholders get when a patient group is now a tangible persona.

3.1.2 Data display

The next stage in analysis, data display, was to structure the data in a visible way so

conclusion drawing and action taking could occur (Miles & Huberman, 1984). Mind mapping is a way to display the data in a visible way, for example to show the reduced data on walls while all stakeholders can participate in categorizing the information (Liedtka & Ogilivie 2011). This is a very important stage in analysis and requires re-reading the text and identifying coherent categories and subcategories. These categories are emergent as they are not predefined but emerged from the collected data (Taylor-Powell & Renner, 2003).

3.1.3 Conclusion drawing/verification

Conclusion drawing and verification is to note patterns in the reduced and displayed data (Miles & Huberman, 1984). This part of analysis consisted of identifying patterns and

relationships between the created categories. When this was done all the pieces of analysed data were brought together to extract meaning from the data. The last part of analysis is explaining the findings and sharing the insights. By using the persona’s created in the data reduction phase it is possible to explain the findings in a story. Story telling is a way of

putting the findings and insights in the context and by doing so even people who are unfamiliar with the project can understand (Stickdoorn & Schneider, 2013).

3.2 Results

3.2.1 Observation & Contextual interviews

The data collected from two times observation and contextual interviews had the form of notes. The notes contained information about the physical room, the people waiting and a small summary of the contextual interviews. The limitations of the observations were that only one of the two observers had taken notes, the observations took place only twice and were both in the summer holidays and thus some specialist were absent. At last the

observers only spoke to patients before entering the treatment room, which can lead to biased results. All this was taken in consideration when analysing the data. In reducing the raw data, three persons had highlighted the notes according to what they found most important. Secondly the highlighted notes were sorted according to the main physical room the information was about.

Only one person had looked at the displayed data because of time constrains. The raw data was displayed in three tables which can be seen in appendix 1 (table 3a,b,c).

3.2.1.1 Front desk

The front office consisted of two people who were busy, as they had no time to clean up the desk, once forgot the sign referring the front desk and once were stressed when cleaning the waiting room. No actual conclusions can be drawn from this as not enough data was collected.

3.2.1.2 Treatment room

The treatment room consisted of four dentists’ chairs with one patient waiting and one patient being treated by the team standing around the chair. At least eight members of the cleft care team were treating the patient while sometimes a specialism was missing. This can be essential information for patients since

sometimes patients only have to see one specialism. If this specialism is missing the patient has come for nothing, this is what happened once during

observation. Besides it might be intimidating to have so many people looking at you while some specialists might not even be necessary at that moment.

Another important observation was that the door of the treatment room was open, the cleft consultant

was dressed in ‘normal’ clothes and patients were called by their forename, which all indicate an informal atmosphere. At the same time all other specialists were dressed in white coats, which can indicate a more formal atmosphere. The director that guides the conversation does not write down anything and thus all specialists themselves write in their computer what is of importance to their specialism alone. These pieces of information are therefore not coherent and might not be understandable for the patient when reading it in their personal file.

3.1.2.3 Waiting room

The waiting room had some improvement points as some lights were defect, the Nintendo 64 controller was defect, only coffee and tea is available and nothing for the children, pictures hanging on the wall and in the photo album were found old by people waiting. Besides the physical improvements there are also service improvements that can be

valuable. Not all expectations were met; especially those of new patients as one thought the intake would take one hour instead of 15 minutes. The waiting time was always unknown by the people in the waiting room which

resulted in stress while waiting and when being called in the treatment room. For example a mother did not know if she could feed her baby or should wait because she is the next in turn.

3.1.2.4 Main insights

The only time the whole cleft care team is together and interacts with the patient and their family is on the consultation hour. By using observation it was possible to observe the psychical setting of the room and interaction between patients while they were waiting. Conducting contextual interviews gave a small look into the patient mind about what they though of the consultation hour and the waiting room. The patient’s basic needs (utility) where met as they where being diagnosed and treated by the cleft care team. The patient’s expectations of the consulting hour were not met as new people had different expectations about the duration of the intake consult. The patient experience of the consultation hour (pleasurability) was not even on the mind of the patients. There are some improvements mainly in the waiting room that can be valuable.

Before pregnancy •only for genetic cleft patients that want a child During pregnancy

•also for non genetic parents that have prenatal diagnosis

After birth

•also for non genetic parents with a post-natal diagnosis and adopted children Surgeries

•for all cleft patients

Additional surgeries

•for cleft patients that chose for this

Genetics

•for genetic cleft patients

3.2.2 Patient blogs

The data collected from the patient blogs were ordered below each other inside one document. It is important to note that the blogs were different in length and origin. Some blogs were very long and consisted of multiple years of written information while other blogs were shorter. Actual patients of the UMC Radboud hospital wrote only two blogs while patients from other hospitals in the Netherlands wrote the other eight blogs. This makes it questionable if the data collected is representative for the patients’ journey of the UMC Radboud. At last it is important to notice that the parents of the patient wrote all blogs that were collected. These limitations were taken in consideration when analysing the data.

3.2.2.1 Reducing and displaying data

In reducing the raw data, two persons had highlighted all sentences according to their importance separately from each other. The highlighted sentences of each blog where put orderly below one another. Therefore every blog now consisted only of sentences or quotes in chronologic order that were found most important. As all information was already in a chronological order, the focus of time was taken. Therefore the reduced data had the form of a hypothetical journey of a cleft patient and his or her family, along with common complications that were named multiple times. The reduced data was complemented with data found during secondary research, which contained protocols from the UMC Radboud hospital. The data was displayed as a hypothetical journey and only seen by one person due to time constrains. The displayed data is visible in appendix 2. A short summary of most important moments is visualized in figure 7.

Figure 7: Most important moments blogs

3.2.2.2 Main insights

The data showed it is important to differentiate between genetic versus non-genetic cleft patients, adopted versus non-adopted cleft patients, prenatal diagnosis versus post-natal diagnosed cleft patients and kind of cleft the person has. By reading the blogs it seemed of utterly importance to differentiate between these groups of cleft patients, since they need different kind of care and different kind of knowledge. Communication was also a returning topic. It seemed not clear who is responsible for referring to the cleft care team, who is responsible for the child’s process, who is responsible for making appointments, how do specialist communicate in and around the hospital and at last where can parents and

patients find which information. These insights show possible points of improvements mostly concerning better, clearer and transparent communication.

3.2.3 Patient journey map

After interviewing 10 patients and their parents, the data collected were 10 reports containing quotes said during the interview and 10 maps showing the journey.

Table 4: General information interviews

General information interviews Interviews: 10

- Only parent interviewed: 1 - Only patient interviewed: 1

- Both parents and patients interviewed: 8

The quality of the interview depended on the openness of the parent and the patient. When interviewing both the parent and child together this lead in some cases to an open attitude from both parent and child and sometimes to parents not daring to speak their mind. Although comprehending the family situation is better when speaking with the parents and child together, it might be a limitation for the quality when interviewing a person with a closed attitude. Another important note is that some people did not want to draw their journey and therefore one of the interviewers had drawn the journey, while the interviewee was talking. This might have biased the sketched journey since the person interviewed might have chosen other words on the post-its. However the interviewers always asked the parent or patient to check the drawn journey on correctness. At last the patients and parents interviewed did not include enough data about a genetic cleft family, foreign family, single parent family and diagnosis during pregnancy. This limitation occurred because only the child’s cleft and age is recorded in the hospitals data system. All parameters that are important can be seen in appendix 3 (table 5).

3.2.3.1 Personas

According to the collected data, three types of personas could be made:

1. Two parent Dutch family with adopted child from special needs program with a combined cleft.

2. Two parent Dutch family with a child with only a palate cleft, diagnosed after childbirth, not genetic

3. Two parent Dutch family with a child with a combination cleft, diagnosed after childbirth, not genetic

Important differences between personas are that persona 1 is dependent on the age of the adopted child, if the child is already operated in the birth country and the severity/kind of cleft. The parents of persona 1 have chosen to have a child with a special need and had