Effective Co-Creation Tool Development for Shared Understanding and Active Communication for Patients with Head and Neck Cancer

To improve the quality of life of cancer patients, patient experience (PE) must be improved along with the overall treatment process. This study aimed to develop an effective and practical co-design tool to improve the healthcare service experience of patients with head and neck cancer (HNC) in various factors. The research consisted of four phases: (1) HNC PE categories for healthcare improvement were identified through systematic review, user interviews, and observation; (2) a focus group meeting was held to materialize the card design; (3) a structured and visual card set was developed for stakeholders to share the content and discuss improvements in PE effectively; (4) to evaluate the feasibility of the developed cards, a co-creation workshop with HNC medical staffs was conducted. From the workshop using insight cards, we identified the differences in the medical staff’s and patients’ perspectives on the factors for improving HNC PE in each stage of the treatment journey. Pat Exp Insight Cards as experience-based co-design (EBCD) tools can be useful for stakeholders to empathize with the specific pain points and needs of patients with HNC and to discuss improvement plans efficiently.


Introduction
Patient experience (PE) is the totality of all interactions with the patient perspectives during treatment [1]. It is a significant factor in the quality of care directly related to the patient's treatment results, safety, treatment effects, and doctor-patient interactions [2][3][4]. PE is crucial for improving healthcare because it includes everything that occurs while a patient receives treatment and covers the emotional aspect [2,5]. As a methodology for improving healthcare, co-design workshops have recently been attracting attention [2]. Co-design is a creative improvement plan for designers to improve PE with various stakeholders, such as medical staff, patients, researchers, and caregivers, including non-designers [2,[6][7][8]. In particular, experience-based co-design (EBCD) designs user experiences where medical staff and patients participate together to improve healthcare services [9][10][11]. Identifying needs based on PE, seeking solutions, and presenting results are conducted through active stakeholder collaboration [12,13]. As an effective service improvement method for improving PE [12][13][14], EBCD includes patients and other stakeholders with varied expertise [15].
For stakeholders to efficiently gather and discuss improvement plans for PE, a shared and deep understanding of the collected data is essential [16]. Most of the existing PE data were collected from the perspective of the medical staff. Since it contained professional An initial card prototype was developed based on the meeting results. To refer to the card design development process, Villalba's case study [2] of designing a co-creation card tool was reviewed. She developed an 85-card set called Healthcare Experience Insight Cards-'living with Diabetes Edition' as a co-creation tool for diabetic patients. The card set comprised four items: theme, detailed insight, quote, and reference. The topmost theme contained topics related to PE identified through literature reviews. Under this theme, insights for improvement by the PE category were introduced, and, below that, quotes from patients extracted from the literature were presented along with references (card link: https: //link.springer.com/article/10.1007/s40271-018-0315-7 (accessed on 15 February 2022)).
The third phase was the card visualization stage, in which the previously developed prototype was refined in detail. Doctors' feedback was received twice on the modified prototype, and the overall composition and contents of the card items were reviewed, including the appropriateness of insights and quotes for each factor and details for efficient design delivery.
In phase four, a usability test was conducted using the completed card prototype, and the effectiveness of the card was verified. For evaluation, a co-creation workshop (25 March 2022) with the medical staff was conducted for two hours. The factors to be considered for improving HNC PE were divided into the patients' and medical staff's perspectives while discussing the importance, priority, and related cases. To maintain consistency of the stakeholders' viewpoints, the participants who attended the second-phase meeting were involved in the workshop. A total of 35 EBCD cards were introduced to the medical staff, and each factor card considered important from the perspectives of the medical staff and patient was selected. When selecting a card, the relevant factor cards were pinned according to the stages of the HNC treatment journey. If the same card was repeatedly selected for each stage of the journey, extra sets of cards were provided when necessary. The priority and importance from the perspective of the medical staff were marked on the card, and they had time to exchange opinions about the reason for their selection. After selecting the factors that should be considered necessary for each stage of the treatment journey from the perspective of the medical staff, factors considered necessary from the patients' perspective were discussed separately. Instead of having the patients directly participate in the workshop, medical staff who interacted closely with patients selected key factors for each stage of the journey based on their medical experience. To reflect the patient's view, the medical staff selected the factors based on the complaints or requests that patients frequently express to the medical staff during treatment. By distinguishing this from their point of view and placing the cards on the journey map, the difference between the medical staff's perspective and the patient's perspective were compared.
After the workshop, feedback on the usefulness and value of the card was received from the medical staff, and further improvements to the design were discussed. Based on that patients frequently express to the medical staff during treatment. By distinguishi this from their point of view and placing the cards on the journey map, the differen between the medical staff's perspective and the patient's perspective were compared.
After the workshop, feedback on the usefulness and value of the card was receiv from the medical staff, and further improvements to the design were discussed. Based the results discussed, the final Pat Exp Insight Cards for patients with HNC, consisting 35 items, were developed.
The flow chart of the research is shown in Figure 1.

Phase 1: Structuring Card Contents
Before deriving the HNC PE factors, a list of general PE factors for QI improvem was identified through a systematic review. By examining the PE factors mentioned in twenty-three selected papers, six categories, eighteen subcategories, and eighty-one s cific PE factors were identified.
To select items applicable to patients with HNC and to reflect their needs in de among the 81 identified items, interviews and observations were conducted targeting p tients with HNC and their caregivers. From the user data, we summarized the needs patients with HNC for each PE factor into key insights through qualitative content ana sis (HNC includes various subsites. However, there is no difference between subsites the treatment principles, the process patients experience after treatment, and proble and complications. Therefore, since the patient's needs are not significantly different each subsite, the study was conducted without classifying by subsite.). As a result, exc for items where the needs of patients with HNC were not directly mentioned, a total six categories (Practice, Physical needs, Psychological needs, Social needs, Practical needs, a Information needs), sixteen sub-categories, and forty-three PE factors were found to hav direct relationship with the needs of patients with HNC (Phase 1 in Table 2).

Phase 1: Structuring Card Contents
Before deriving the HNC PE factors, a list of general PE factors for QI improvement was identified through a systematic review. By examining the PE factors mentioned in the twenty-three selected papers, six categories, eighteen subcategories, and eighty-one specific PE factors were identified.
To select items applicable to patients with HNC and to reflect their needs in detail among the 81 identified items, interviews and observations were conducted targeting patients with HNC and their caregivers. From the user data, we summarized the needs of patients with HNC for each PE factor into key insights through qualitative content analysis (HNC includes various subsites. However, there is no difference between subsites in the treatment principles, the process patients experience after treatment, and problems and complications. Therefore, since the patient's needs are not significantly different for each subsite, the study was conducted without classifying by subsite.). As a result, except for items where the needs of patients with HNC were not directly mentioned, a total of six categories (Practice, Physical needs, Psychological needs, Social needs, Practical needs, and Information needs), sixteen sub-categories, and forty-three PE factors were found to have a direct relationship with the needs of patients with HNC (Phase 1 in Table 2).    [2]. The key considerations were set as shown in Table 1 to develop an effective design for representing the experience of patients with HNC and discussing effective improvement plans through stakeholders' shared understanding and effective brainstorming.

Focus Group Meeting for Card Development
A focus group meeting was held to discuss the appropriateness of the content composition and design direction of the Pat Exp Insight Cards for patients with HNC.
As a result of reviewing the contents of the PE factor list, the initial categories were reclassified by filtering redundancy between items and integrating items with similarity in meaning. As a result, a new category of Interaction was added to the existing six categories, and the names of the sub-categories and PE factors were partially changed to convey a precise meaning. According to the reclassification, seven categories, sixteen sub-categories, and thirty-six PE factors were systematized (Phase 2 in Table 2). For example, 'Hard to understand,' 'Easy to understand,' and 'Interaction between doctor and patient' of 'Knowledge' highlight the aspects that the patient does not understand the explanation of the medical staff well. Thus, we integrated the three items into 'hard to understand' to convey precise meaning to the subject. In 'Information', 'What patients want to know,' 'What else to know,' and 'Alert effects of treatment' were integrated into 'What patients want to know' as they corresponded to the information the patient wants or needs to know. 'Understanding patient's life situation' and 'Building a trusting relationship' under 'Communication' and 'Breaking the ice' under 'Respect' and 'Cure vs. Relief' under 'Respect' were judged to be the content corresponding to the respectful attitude of the medical staff to relieve the patient's anxiety and build a positive relationship, so these items were moved into a new category of 'Interaction'.
The discussion results of the four design directions of the card are as follows: First, to reflect patient-centered perspectives and needs, it was necessary to present specific pain points and opinions for each PE factor. It was agreed that extracting cases that best explained each PE factor from the patient's interview and observation data and then presenting a quotation would be effectively convey the patient's voice.
Second, it was discussed that an effective delivery method for best understanding PE factors was presenting categories and sub-categories together instead of showing one of them. This facilitated a better understanding of the classification system and a higher concept level for each factor. This method was chosen instead of introducing only the PE factors on the card. However, it was agreed that it was necessary to visually show the hierarchy to distinguish the relationship between each factor clearly.
Third, to facilitate an intuitive understanding of the card's contents, it was suggested to implicitly express specific situations using illustrative images instead of realistic images, such as photographs, to make it more effective. However, the meeting participants recognized that interpreting the core meaning was crucial to clearly and symbolically convey the concept of each PE factor when creating an image. It was emphasized that the card design image should be an action-based emotional exchange and that interactions could be read well in the image.
Fourth, to express the diverse perspectives of stakeholders, it was preferred that various direct and indirect stakeholders be included. Although the direct subject-centered type is suitable for patients to focus on, it was judged to be helpful to include several direct and indirect stakeholders for discussion. However, to simplify the format, the stakeholders should be classified into three types: medical staff, patients, and caregivers, where each type was presented as an icon to enhance visual distinguishment. For example, medical staff icons were developed for HNC doctors and medical staff in other departments. The insights suggested for each card were presented in one summarized sentence to facilitate an intensive discussion. It was agreed that the most common cases were presented instead of exceptional cases to consider general-purpose usage. The HNC specialists carefully reviewed the list of 36 PE factors modified through the focus group meeting. They reviewed the appropriateness of the insights and quotes developed for each factor and provided feedback on the factors' structure and the hierarchy's suitability.
As shown in Table 2, No. 3 merged the 'disconnected care system' and 'after discharge' of phase 1 into one. In No. 5, the term 'issues with physical symptoms' was modified to 'issues related to complications' considering that HNC patients had frequent complications. In No. 19-22, among the items belonging to social needs in phase 1, items related to the relationship between doctors and patients and doctors' attitudes towards patients were separated from the category of social needs and moved into the newly established interaction category. Items 27 and 28 originally belonged to practical needs but were moved to the information needs category as they corresponded to the contents of delivering treatment information to patients. In No. 31, the expression was modified by integrating various information that the patient wanted to know into 'comprehensive treatment information'. Finally, the expression used in the previous phase was modified more concisely for No. 32 and summarized as 'information about care plans'.
As a result, quotations were replaced with general cases instead of exceptional cases and modified. Names of PE factors were changed to convey precise meaning, integration, and changes between similar items, and insight content was modified. Based on this feedback, the list was revised into seven categories, fifteen sub-categories, and thirty-five PE factors (Phase 3 in Table 2).
First, the category of Practice (1) includes perspectives of both patients and medical staffs. It deals with factors related to the hospital's administrative and procedural systems, including three sub-categories: System (1-1) aspects, including complex and disconnected systems (patients are confused because each hospital has different systems) and clinician's workload (the same explanation has to be repeated every time the caregiver changes), Coordination (1-2) regarding the disconnected care system (difficulty in hearing conflicting opinions between departments or obtaining comprehensive information), and Skill (1-3) related to the diagnostic procedure and guidance (preliminary evaluation must be conducted for accurate cancer diagnosis).
Second, the Physical needs (2) category consisted of items about the physical pain felt by the patient, including two sub-categories: Physical support (2-1) regarding issues related to complications (wanting side effects after surgery to be minimized) and Physical symptoms (2-2) that cover both in case of emergency (possibility of emergency, such as shortness of breath, and guidance on how to respond) and the contents of physical symptoms and pain after surgery (discomfort to breathe, eat, and talk after surgery).
Third, the Psychological needs (3) category deals with the patient's emotional aspects, introducing the negative psychology of patients during the treatment process and the encouragement and support of medical staff. It includes two sub-categories: Emotional support (3-1), including the doctor's empathy (the doctor shows a positive attitude toward patients) and motivates the patient (explaining that his/her condition can improve after surgery through rehabilitation), and Psychological symptoms (3-2) dealing with feelings of frustration (extreme psychological pain from multiple surgeries and fear of permanent side effects) and the emotional impact of results (willingness to recover or increased depression depending on the outcome of the surgery).
Fourth, the Social needs (4) category consists of items related to interactions between patients, caregivers, and medical staff and includes two realistic aspects, such as economic support and rehabilitation guide related to treatment: Communication (4-1) consisting of too old to understand (older patients have difficulty understanding explanations and are passive in expressing their opinions), disagreement between family members (the timing may be delayed due to differences in opinion between the patient and the caregiver on the treatment method), and tools to communicate (non-verbal communication tools are needed due to difficulties in vocalization and articulation after surgery), and Support & Involvement (4-2) dealing with maintaining daily life (requires a guide on exercises and habits that patients must manage on their own after discharge), motivated by clinicians (the encouragement and consolation of medical staff after surgery increases the will to treat), having family at the bedside (wanting comfort and encouragement from close people), and finance & insurance (high burden of non-coverage costs and long-term treatment costs).
Fifth, the Interaction (5) category includes personal and emotional aspects rather than social needs to build trust and bond between patients and medical staff covering the sub-category of Respect (5-1): understanding the patient's life situation (requires an understanding of the patient's circumstances, such as where they live and work), building trusting relationships (diagnosis based on clear evidence, encouragement by medical staff, communication channels through which patients can express their opinions and help build mutual trust), breaking the ice (it is necessary to reduce the patient's tension and build a bond with small talk), and clinicians' positive attitude (it is essential to deliver objective facts with a positive attitude rather than showing excessive hope).
Sixth, the Practical needs (6) category deals with items related to the convenience of the patient's treatment process: Access to care (6-1) covering the minimum waiting time (patient wants to be treated as quickly as possible), ASAP (wanting to advance the surgery schedule as quickly as possible), useful helper (need help with guidance and appointments for new patients), and easy to access (prefer a hospital close to home or convenient transportation).
Finally, the Information needs (7) category includes four subcategories: Access to information (7-1), meaning the more information, the better (the patient tries to find as much information as possible on the internet), and keeping patients informed (requires periodic guidance on treatment schedules, etc.), Knowledge (7-2) related to information overload and difficulty in understanding (challenging to understand if you receive a great deal of information at once), Information content & extent (7-3) providing up-to-date information (you want prompt and continuous guidance on treatment progress), comprehensive treatment information (wants to know comprehensive information about the entire treatment process), information about care plans (you need a guardian right after surgery and you need to take care of yourself after discharge), limited information on the internet (challenging to find accurate and necessary information on the internet), Education (7-4), including patient education for prevention or rehabilitation (requires long-term rehabilitation training and education for forming preventive habits), and patient education for self-care (education that can systematically help with long-term rehabilitation training that is difficult to carry out alone after discharge is needed).

Card Visualization
The card was designed based on the final list of Pat Exp Insight Cards for patients with HNC. The design principles were applied based on the previously established design direction and results of the focus group meeting. The card layout comprised categories, sub-categories, PE factors, quotations, insights, illustrated images, stakeholder icons, and code/card numbers.
The title of each category is shown at the top of the card front, indicating that it corresponds to the highest level in the HNC PE category. Color codes were applied to each category to make it easier for users to identify significant topics. The front of the card was designed to highlight the title to help users understand the concept and classification system of the subject. The title of the sub-category is placed below the category title, and the PE factor and related image are placed in the center to highlight the subject. The notation was written in Korean and English to consider the usability and convenience of users.
Insights and quotations for each PE factor are placed on the back of the card for users to understand the patients' needs in detail and access their actual voices. Each insight and quote reflects the perspectives of medical staff, patients, and caregivers in various ways, and each stakeholder is visualized as an icon to distinguish between them. For each card, the card number is marked on the lower right corner of the back page, and the code number is marked on the lower left corner of the front page. Therefore, even if the cards are mixed, the types can be distinguished and classified using numbers ( Figure 2).
The title of each category is shown at the top of the card front, indicating that it corresponds to the highest level in the HNC PE category. Color codes were applied to each category to make it easier for users to identify significant topics. The front of the card was designed to highlight the title to help users understand the concept and classification system of the subject. The title of the sub-category is placed below the category title, and the PE factor and related image are placed in the center to highlight the subject. The notation was written in Korean and English to consider the usability and convenience of users.
Insights and quotations for each PE factor are placed on the back of the card for users to understand the patients' needs in detail and access their actual voices. Each insight and quote reflects the perspectives of medical staff, patients, and caregivers in various ways, and each stakeholder is visualized as an icon to distinguish between them. For each card, the card number is marked on the lower right corner of the back page, and the code number is marked on the lower left corner of the front page. Therefore, even if the cards are mixed, the types can be distinguished and classified using numbers ( Figure 2). The 35 Pat Exp Insight Cards for patients with HNC developed through the above process introduce the items in the order of category, sub-category, and PE factor on the front of the card to clearly understand the criteria of the subject to be discussed. The PE factor is emphasized in large and bold letters, ensuring the subject stands out well for each card. An illustration image visually symbolizing the subject was developed for each factor, and the code number according to the category classification system was marked. On the back of the card, insights into improving PE based on the needs of patients with HNC were introduced. Quotes were added to convey the stakeholders' opinions related to the insights. For convenience, the number of cards was written at the bottom. The complete Pat Exp Insight Cards list can be found in Appendix A.

Co-creation Workshop Using the Pat Exp Insight Cards
A co-creation workshop was conducted with the HNC medical staff to evaluate the usefulness and value of the Pat Exp Insight Cards for patients with HNC ( Figure 3). It was conducted to identify specific factors to improve the medical experience of patients with HNC and to discuss the relative importance of each stage of the patient's treatment journey and the stakeholders' perspectives. The 35 Pat Exp Insight Cards for patients with HNC developed through the above process introduce the items in the order of category, sub-category, and PE factor on the front of the card to clearly understand the criteria of the subject to be discussed. The PE factor is emphasized in large and bold letters, ensuring the subject stands out well for each card. An illustration image visually symbolizing the subject was developed for each factor, and the code number according to the category classification system was marked. On the back of the card, insights into improving PE based on the needs of patients with HNC were introduced. Quotes were added to convey the stakeholders' opinions related to the insights. For convenience, the number of cards was written at the bottom. The complete Pat Exp Insight Cards list can be found in Appendix A.

Co-Creation Workshop Using the Pat Exp Insight Cards
A co-creation workshop was conducted with the HNC medical staff to evaluate the usefulness and value of the Pat Exp Insight Cards for patients with HNC ( Figure 3). It was conducted to identify specific factors to improve the medical experience of patients with HNC and to discuss the relative importance of each stage of the patient's treatment journey and the stakeholders' perspectives.
As a result of the workshop, the medical staff selected different factors that were considered important for each stage of the journey (Figure 4). In addition, since each medical team has a different field of responsibility or a different stage of communication with patients, it was possible to have a detailed discussion focusing on the period in which one is in charge. Table 3 compares the differences in PE factors that are considered important from the perspectives of doctors and patients at each stage of the treatment journey for HNC. For example, in the preoperative counseling stage, the patient discusses and decides on the direction of treatment after the cancer diagnosis with the doctor. At this time, the most important factor to consider from the perspective of medical staff was Building a trusting relationship (Card No. 20). Regarding this factor, the doctor pointed out that it is difficult to have an interactive discussion with the patient if they show an aggressive and distrustful attitude. It was also mentioned that, when a patient trusts and relies on a doctor, there is a strong tendency for decisions regarding treatment direction and future treatment processes to be made continuously. As a result of the workshop, the medical staff selected different factors that were considered important for each stage of the journey (Figure 4). In addition, since each medical team has a different field of responsibility or a different stage of communication with patients, it was possible to have a detailed discussion focusing on the period in which one is in charge. Table 3 compares the differences in PE factors that are considered important from the perspectives of doctors and patients at each stage of the treatment journey for HNC. For example, in the preoperative counseling stage, the patient discusses and decides on the direction of treatment after the cancer diagnosis with the doctor. At this time, the most important factor to consider from the perspective of medical staff was Building a trusting relationship (Card No. 20). Regarding this factor, the doctor pointed out that it is difficult to have an interactive discussion with the patient if they show an aggressive and distrustful attitude. It was also mentioned that, when a patient trusts and relies on a doctor, there is a strong tendency for decisions regarding treatment direction and future treatment processes to be made continuously.
On the other hand, the factors for improvement from the patient's perspective that medical staff understand based on medical experience were identified as the Doctor's empathy (No. 8), Emotional impacts of results (No. 11), Motivating the patient (No. 9), and Feeling frustrated (No. 10). These factors were selected because patients frequently show very negative and hopeless feelings toward the medical staff. Patients generally want their doctors to provide them only hopeful stories; however, from the perspective of doctors, who must deliver information based on objective facts, the difficulties of delivering information positively are also discussed.
In short, as a result of the workshop using the Pat Exp Insight Cards, it was confirmed that the difference in perspective between medical staff and patients was clearly revealed. While the patient had a strong desire to be emotionally supported by the doctor, the medical staff appeared to emphasize forming a bond with patients and improving their understanding to obtain efficient and successful treatment results. In addition, by visually    On the other hand, the factors for improvement from the patient's perspective that medical staff understand based on medical experience were identified as the Doctor's empathy (No. 8), Emotional impacts of results (No. 11), Motivating the patient (No. 9), and Feeling frustrated (No. 10). These factors were selected because patients frequently show very negative and hopeless feelings toward the medical staff. Patients generally want their doctors to provide them only hopeful stories; however, from the perspective of doctors, who must deliver information based on objective facts, the difficulties of delivering information positively are also discussed.
In short, as a result of the workshop using the Pat Exp Insight Cards, it was confirmed that the difference in perspective between medical staff and patients was clearly revealed. While the patient had a strong desire to be emotionally supported by the doctor, the medical staff appeared to emphasize forming a bond with patients and improving their understanding to obtain efficient and successful treatment results. In addition, by visually and structurally understanding the differences in viewpoints among stakeholders through cards, it was possible to empathize and compromise with each other's opinions more efficiently.

Evaluating the Value of Pat Exp Insight Cards for a Co-Creation Tool
Participants evaluated the effectiveness and value of the cards in three main aspects at the end of the workshop.
First, the voices of patients with HNC could be heard in detail through quotations presented on the cards. From the perspective of medical staff, who usually have difficulty obtaining direct feedback from patients other than complaints about treatment results, it was suggested to be very useful and exciting because the patient's point of view could be accessed through various factors. In addition, conducting user research to improve PE requires considerable time, effort, and money. By transferring this research data into card content, the advantage of obtaining efficiency is that various participants can quickly and conveniently understand and share the patient's needs. It was also found that the medical staff could participate in improvement discussions without feeling reluctant. They could indirectly meet the requirements without receiving direct patient complaints or attacks. In addition, it was evaluated as a positive aspect that practical discussions are possible during the COVID-19 pandemic, where direct contact with older patients is a concern.
Second, participants involved in improving PE were generally confined to their specific areas of responsibility to meet and address patient needs. There are few opportunities to think about and approach the overall treatment journey and various PE factors in an integrated manner. The Pat Exp Insight Cards comprise seven categories that include various aspects, such as the hospital system, patient's physical/psychological needs, doctor-patient interaction, and patient education and support. This allowed workshop participants to examine various factors other than the fields they knew comprehensively. For example, the medical staff who participated in the workshop had different points of contact (touch points) to meet and communicate with patients, leaving them no opportunity to think about anything other than the voices and requirements of patients, limited to their stage of the journey. Through this co-creation workshop, by meeting and understanding the needs of patients in fields where they are not in charge, the card was highly valued by the participants as it provided an opportunity for flexible communication between the medical staff. Additionally, by identifying the importance and priority of each factor based on the actual pain point of the patient, an initiative was provided to discuss and derive ideas on the aspects that should be improved first.
Third, because shared understanding is based on the specific pain point of the patient in the process of discussing the improvement of PE by gathering experts from various fields, it did not end with the development of abstract ideas but confirmed the possibility of presenting tangible solutions at a concrete and realistic level. For example, by sharing pain points, response know-how, and realistic PE situations accumulated by medical staff with other participants, experts in other fields can enhance their understanding and knowledge of healthcare services. They can also look at problems from a new perspective and explore ideas from their perspective. Medical staff can provide realistic advice on the various potential solutions explored in this process, thereby developing feasible outcomes.
Based on the above three aspects, the effectiveness and value of the Pat Exp Insight Cards were confirmed. Workshop participants evaluated the card set developed for shared understanding and effective brainstorming in different fields as a meaningful tool for value co-creation between patients and doctors and creative interdisciplinary collaboration of various interests. In particular, in a realistic situation where collaboration between departments and systems of complex and specialized hospitals is difficult, medical staff emphasize the effectiveness of the card set in terms of providing a co-creation tool for active collaboration and presenting an integrated perspective in which medical staff from various fields can meet and actively discuss various factors of PE.

Discussion
In this study, an effective EBCD card (Pat Exp Insight Cards) was developed to improve patients' healthcare experiences with HNC. As a result, the value and effect of cards as a co-creation tool for improving patient-centered healthcare experiences could be confirmed as follows.
We identified primary PE factors through a literature review to provide various factors for improving HNC PE. Based on user research data targeting patients and their caregivers, we identified seven categories, fifteen sub-categories, and thirty-five PE factors. The identified categories of PE factors were developed as a graphic card deck so that users with various knowledge and expertise could participate and brainstorm effectively to improve PE.
First, this study materialized PE factors derived from a review of previous studies by linking them to actual patients' needs. The voices and needs of patients with HNC who have difficulty directly participating in improving PE were indirectly conveyed. We actively reflected on the data collected through empirical research, such as interviews and observations, in the cards' contents and presented them as primary data to understand the experience factors. Through this, members who participated in the co-design to improve PE were able to identify the specific and practical needs of patients with HNC based on various factors.
Second, the primary user data for improving PE were categorized by the PE factor and transferred into cards to be continuously used in improving QI rather than being a one-off. Generally, user research to improve the QI requires time, money, and effort. Thus, recording and cataloging the collected user data and converting them into structured visual materials, such as cards, can lead to significant economic savings.
Third, experts in various fields can gather and actively and creatively solve problems using visual images and easy-to-understand terms, knowledge, and information in the specialized and complex medical field, making it easy for all participants to access and share knowledge. When forming a multidisciplinary team to improve QI, finding a starting point for communication is difficult because effective brainstorming based on a shared understanding can be challenging. The EBCD card can mediate in flexible and efficient collaboration in the medical field where there is a conflict of interest between specialized fields. As such, the value of the card developed in this study as a co-creation tool is supported by the claim that the card is helpful as a co-creation tool among the multidisciplinary team for brainstorming PE improvement mentioned by many researchers [2,[19][20][21][22][23][24][25]. In particular, compared to Villalba's [2] development of an insight card for diabetic patients, this study has distinction and strength because it targeted patients with HNC who have a low quality of life and generally low satisfaction with treatment due to long-term treatment period, frequent complications, and difficulty in daily behavior.
Fourth, continuously accumulating user survey data of patients with HNC is vital for long-term data management and use. Since the PE factor items presented in the EBCD card can act as a standard for collecting, accumulating, and classifying user voices and needs, it can serve as a framework or platform for building a PE database.
A limitation of this study is that the collection of user data to improve the experiences of patients with HNC is in the early stages. Thus, continuous data collection and accumulation should be conducted by targeting more patients, caregivers, and stakeholders. In addition, considering the flexible and practical use of EBCD cards, tests, and evaluations under varied conditions according to the participation of various stakeholders and the purpose of improvement should be conducted.

Conclusions
In this study, the Pat Exp Insight Cards were introduced as a co-creation toolkit that indirectly represents the patients' opinions with HNC and allows various stakeholders to collaborate effectively based on shared understanding. In the medical field, where collaboration is mutual and challenging, communication is limited owing to conflicting interests in complex and specialized fields. Efficient sharing of knowledge and opinions to improve PE with other stakeholders positively impacts patients' quality of services and positive treatment outcomes. The systematic collection and accumulation of PE data are difficult to access; hence, flexible sharing and discussion of data knowledge among stakeholders are essential. Therefore, efficient tools such as the EBCD card developed in this study are valuable to improve the quality of PE. Based on the results of this study, Pat Exp Insight Cards is expected to be used as an active co-creation tool for other cancer patients in addition to patients with HNC or for improving the healthcare field.  Informed Consent Statement: Informed consent was obtained from all subjects involved in the study.

Data Availability Statement:
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.
Each hospital is operated with a different system. Therefore, patients may experience confusion or unfamiliar procedures whenever they visit a new hospital. For patients to use the hospital more comfortably, it is necessary to apply a standardized system to enable a basic understanding of the overall procedure.
[C] "Each hospital has a slightly different system. There are also budget constraints on staffing, training, and equipment. So, there are cases where the data is out of date or not connected to other systems, so I think it would be good to standardize it overall. It's good for patients to know what systems and procedures they will go through before coming to the hospital."

Clinician's workload
If the caregiver changes frequently during the patient's treatment period, the medical staff's previously explained contents are disconnected, resulting in the burden of repeating the same content to the new caregiver each time. To minimize repetitive explanations, a method for efficiently conveying information to caregivers and closely sharing content between caregivers and patients is required.
[C] "It's hard when the caregiver keeps changing. In the beginning before the surgery, I gave the patient's son a detailed explanation of the surgery, but after that, the patient's daughter came and asked for another explanation, saying that she hadn't heard any of the explanations. I explained enough to the caregiver at first, but it's hard when another caregiver shows up and complains to me." (1-2) Coordination 3 Disconnected care system Patients with HNC frequently collaborate with other medical departments due to various complications. Due to the lack of linkage between departments, patients sometimes hear conflicting opinions from each department and receive disconnected information. An efficient linkage method between departments is needed to enable integrated treatment management and information delivery for patients.
[P] "I'd love to hear it all in one place. Doctors are not good at persuading other fields because they are only experts in their own field. So they don't talk about other fields at all." Studies in cancer diagnosis are necessary for accurate cancer diagnosis. It takes a certain amount of time to schedule an examination, read the results, and make a diagnosis, but patients are anxious because they want to know the results quickly. There is a need for a method of guiding patients about the contents, required time, and process of studies that must precede cancer diagnosis.
[P] "I couldn't get better even after taking medicine, so I thought I'd go to the hospital and get a consultation. The doctor said it doesn't look too bad, but he ordered a biopsy. He said that I needed another detailed evaluation tests, so I had a PET-CT scan and a few more tests." (2) Physical needs (2-1) Physical support 5 Issues related to complications Patients want to minimize side effects without leaving behind external obstacles, such as facial depression after surgery. In addition, it is hoped that the surgical incision site will be well finished to reduce the appearance of aftereffects and not interfere with daily life, such as eating. Medical staff's efforts and methods are required to minimize these complications and side effects in the course of treatment.
[P] "I'm worried about how much the face will be sunken. I can't help it if the disability remains, but I wish it wasn't." (2-2) Physical symptoms 6 In case of emergency Emergencies such as dyspnea may occur during the treatment of HNC. The medical staff explains in advance to the patient and caregiver about the possibility of such an emergency and how to respond. The medical staff needs to explain that they are fully prepared for emergencies to prevent patients becoming anxious.
[P] "They said that emergencies may occur during surgery. In that case, he said that additional tests such as ultrasound could be done during the surgery".

Physical symptoms & pain after surgery
After surgery, the patient is uncomfortable with eating, and it is difficult to supply nutrients, recovery is slow, and communication is hard due to difficulty in vocalization and articulation. Patients need help to minimize physical discomfort and pain and recover quickly.
[P] "Because I took out six of my right upper teeth to make a model, I can't chew food with my teeth, and I can't even taste it. After eating, you should take these dentures out and clean them again. It's annoying, and after doing this, I hate eating anything." (3) Psychological needs (3-1) Emotional support 8 Doctor's empathy Patients/caregivers react sensitively to the doctor's words and attitude. Even in the worst situation, patients and caregivers do not want to give up hope until the end; hence, the medical staff needs to maintain a positive attitude while delivering objective facts. Thus, we need a way to empathize with and support the psychological anxiety and tension of patients and caregivers.
[P] "It's the worst situation, but if the teacher speaks weakly, we lose heart too. I hope they are at least a little hopeful." 9 Motivate the patient Patients have vague anxiety about complications and pain that may occur after surgery and sometimes have doubts about the treatment itself. The medical staff needs to explain that the patient's condition can gradually improve through rehabilitation after surgery, thereby reducing the patient's psychological anxiety and inducing them to take an active attitude toward treatment.
[C] "After it heals later, if you keep training and exercising, it will get better little by little." (3-2) Psychological symptoms 10 Feeling frustrated Patients experience considerable psychological pain during difficult operations. It is necessary for the medical staff and those around patients to fully sympathize with and comfort the patients' anxiety about unpredictable treatment results.
[F] "I think I became a cancer patient from the day I found out he had cancer. I can't even tell you how hard it was mentally, very much."

Emotional impacts of results
The patient's psychological state changes greatly depending on the progress after surgery. If the progress is good, the patient's will to recover to engage in treatment and rehabilitation is strong, but, if not, depression and frustration deepen and they give up the treatment midway. Depending on the treatment results, it is necessary to empathize with and support the patient.
[P] "I was depressed, but after treatment, it got better. [P] "I was not given detailed guidance on how to behave from now on, but I think I was told to quit drinking and smoking and exercise regularly." Motivated by clinicians Patients need long-term rehabilitation treatment and management after discharge, during which it is not easy to regularly maintain daily life alone. To motivate the patient for continuous rehabilitation treatment, it is necessary to have a window and method for the medical staff to check the patient's condition and encourage them regularly, including follow-up.
[P] "The first time I went to see the professor after being discharged, he encouraged me saying that I had endured the difficult surgery well. He helped and encouraged me a lot. Since the professor performed the surgery well, I should have hope while undergoing rehabilitation treatment."

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Having family at the bedside Patients want to receive support and encouragement from loved ones about their difficult situations. In particular, during the hospitalization period, they hope that families and friends visit the hospital frequently and communicate closely. There is a need for a window and method through which patients and their neighbors can communicate directly or indirectly.
[P] "What can I do when there is no one around me who can support me or encourage me?"

Finance & insurance
Patients' treatment costs can be partially supported through the government and insurance. However, there is still a great burden for older patients, such as additional non-insured costs in case of an emergency during surgery. There is a need for a system that can actively guide cost support benefits and methods and share information.
[P] "The dentures I'm doing now cost 2.5 million Korean won. For chemotherapy, it costs 2 million won each and an additional few hundred won. Fortunately, the government subsidizes 95% of the treatment cost for severely ill patients." Understanding patients' life situation When patients visit the hospital for the first time, they feel nervous and anxious. For the patient to have a more comfortable conversation with the doctor, medical staff should think about how to understand the patient's personal situation.
[C] "Where is your home? Did you come from the province?" 20 Building a trusting relationship The higher the trust in the doctor, the higher the patient's willingness to be treated. The doctor needs to explain and understand the contents from the patient's eye level to ensure that the patient can trust the medical staff and actively engage in treatment. Efforts and methods are required to form a psychological bond, such as active communication with patients.
[P] "They don't use English that much, and they just explain in their own words, so it was easy to understand, and I liked it better. It was good that the doctor didn't just pass over something like inflammation and checked it properly."

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Breaking the ice When a patient visits the hospital for the first time, he or she feels nervous and anxious. In addition to treatment-related content, medical staff need a way to build a bond with the patient and relieve tension, such as inducing comfortable conversation based on everyday subjects.
[C] "How is your relationship with the person who came here?" Patients always want to hear positive news from their doctors. However, since it is very important for medical staff to deliver content based on objective facts, their neutral attitude often causes frustration for patients/caregivers. Therefore, while delivering objective information, it is necessary to maintain a positive attitude in consideration of the patient's position.
There are a lot of downsides to surgery, and in fact, I'm not saying that everything here happens, but I still must explain them all." (6) Practical needs (6-1) Access to care 23 Minimum waiting time Patients want to have surgery as soon as possible, but long waits may occur depending on the existing schedule. It is necessary to actively improve the efficiency of the system to minimize the patient's waiting time and provide sufficient information to the patient.
[P] "At first, the reservation was delayed, so I waited for several days and got tested again. Later, I found out that in an emergency, the examination can be carried out quickly. It would be better if they let us know in advance."

ASAP
Patients want to have tests and surgeries as soon as possible and are very nervous while waiting for test results. It is important to minimize the waiting time for patients to receive examination and treatment and to inform them in advance of the expected time required for the examination/treatment.
[P] "It took a week for the biopsy to be run, but the doctor is busy again, so there is no available date."

Useful helper
Because patients are not familiar with the hospital environment and system, they experience difficulties in administrative procedures, such as reservations, visits, and document submissions during the treatment process. For the patient to focus on the treatment with a more comfortable mind, it is necessary to arrange for medical staff or the system that supports the necessary help in the patient's treatment process.
[P] "When it was difficult to understand the reservation order or procedure, assistant helped me, so I didn't get confused."

Easy to access
For patients, visiting the hospital itself becomes a burden when the hospital is far from home or transportation is inconvenient. Although hospitals close to home and easily accessible are preferred, it is necessary to provide convenient means of transportation, visits to hospitals, and parking environments to ensure patients have the right to choose medical services.
[P] "In fact, if it's the same way, I'm better off closer to home." (7) Information needs (7-1) Access to info 27 The more (information), the better Patients and caregivers try to find as much additional information as possible through the internet regarding their diseases and treatment methods. Methods and channels for providing medical information through which they can systematically search for reliable information must be prepared.
[P] "I've never heard of tongue cancer. So, I searched the internet, but I couldn't understand it. However, my children joined a club and learned about other surgeries through people who had been treated for the same cancer as me."

Keeping patients informed
It is very useful for patients to manage their schedules by periodically guiding them to information that they should not forget, such as appointment time. It is necessary to continuously guide patients with information in a way that they can easily check and remember.
[P] "It was nice to constantly be reminded of the date and time by text message." It is difficult to understand when a large amount of information is delivered to the patient at once. To help their understanding, the content should be divided according to priority or importance, or explained in easy-to-understand language. It is necessary to use tools that can help understanding when needed.
[P] "It's the first time I've heard of cancer, so I wonder if it can't be done without an incision, and it was difficult to understand because the names of cancers are so diverse and difficult. Since I didn't know anything, I pretended to understand and just said 'Yes, please do well' when the professor said a lot." Provide up-to-date info Patients and caregivers are very curious about the patient's progress after surgery, so they want to be updated quickly on their treatment progress. Methods for prompt updates of the patient's treatment progress and close interaction between medical staff and patients must be systematized.
[F] "After my younger brother was discharged from the hospital, he was in the integrated nursing ward for a month, but I never went to see him because of COVID-19. So, I was so grateful that the nurses in charge informed me of the patient's condition in detail by text message every evening."

Comprehensive treatment information
Patients want to be guided through the overall process of treatment, including studies and diagnosis, decision on treatment methods, hospitalization procedure, care plan, operation time, cause of cancer, and rehabilitation. A system that comprehensively guides patients with the necessary information to help them understand their treatment should be established.
[P] "I think it would be really comforting if you could explain, 'You're in this state right now, but this will change in the future.'. I wonder how long the surgery will take, whether I can return to my daily life once I recover after surgery, how the checkup is conducted, and whether there is a ward to be hospitalized. It would be nice if you could tell me about how many rounds of chemotherapy should be done after surgery." Information about care plans After surgery, patients need a caregiver for close care, and, since it is difficult to manage everything on their own even after discharge, a care plan is necessary. It is necessary to explain related contents and deliver information to the patient at an appropriate time for the patient to create a care plan in advance and prepare for the operation.
[F] "My father was moved to a general ward at an unexpected time. When you are in the ICU, nurses take care of you, but when you come to the general ward, you need a caregiver. There was no support in the ward, so I felt a big difference from when I was in the ICU."

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Limited information on the Internet In some cases, hard-to-know information, such as rare cancer and poor prognosis, is obtained through internet data search, but, in many cases, it is difficult to find data and inaccurate information is acquired. It is necessary to develop information delivery media and content that are easy to access for patients to find related information and deliver reliable content.
[P] "At first, I searched for cancer information on the Internet, but there was no detail, just bragging about the hospital where they work. There is no useful information at all on the internet." After treatment, the patient must continue rehabilitation training, such as eating, swallowing, and speaking. Regarding alcohol/tobacco, which causes cancer, it is important to actively conduct education on abstinence and smoking cessation. Various educational programs should be actively provided for rehabilitation after the treatment of patients or cancer prevention for the general public.
[F] "Alcohol and cigarettes were cited as direct causes of cancer. My younger brother also drank and smoked a lot, but he never said that he drinks or smokes. I want everyone to stop smoking."

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Patient education for self-care For the successful rehabilitation of patients after treatment, it is important to continuously train and manage themselves, but it is very difficult to handle everything alone. Therefore, it is necessary to educate patients on self-management methods, such as rehabilitation training, diet control, and smoking cessation management, and to systematically and continuously provide relevant data to patients.
[P] "He kept telling me to practice chewing, read books, and practice moving my tongue. However, it is not easy to do it alone." habilitation training, diet control, and smoking cessation management, and to systematically and continuously provide relevant data to patients.