Severe uncontrolled asthma (SUA) affects around 3.9% of patients with asthma.1 SUA is a complex chronic illness with a negative impact on the quality of life of patients that has been associated with a heavy healthcare burden.2 The prevalence and relevance of comorbidities, added to the emergence of new therapeutic options, have led to the establishment of multidisciplinary severe asthma teams (MDSATs) to ensure appropriate management.2,3

MDSATs have demonstrated to positively impact the management of the SUA, with a major role in healthcare, research and training.3,4 However, the operation of MDSATs entails considerable organizational complexity, as it involves streamline communication and coordination between professionals from different departments. Therefore, for MDSATs to effectively meet the needs of patients and professionals, it is essential to adopt a comprehensive and integrative design and implementation strategy.5 In this context, the MDSAT of our hospital developed the ASfarMA project.6

Our MDSAT was created in 2018 and holds certification from the Spanish Society of Allergology and Clinical Immunology (SEAIC) of the Spanish Society of Pulmonology and Thoracic Surgery (SEPAR) of the World Allergy Organization (WAO). The MDSAT involves professionals from the departments of allergology, pharmacy, immunology, pulmonology, otorhinolaryngology, pediatrics, psychiatry and radiology. Initiated in 2020, the ASfarMA project encompasses a set of innovative, person-centered measures and adopts a comprehensive approach that integrates illness, treatment, healthcare delivery, and perceived quality, with the overarching aim of improving healthcare standards.6

Person-centered design (PCD) is a holistic approach to solving problems and designing products, systems or processes that are useful and practical for users by meeting their real needs.7,8 In this model, users are actively integrated in the development process to better understand and systematically analyze their needs, expectations and experiences and jointly design innovative solutions that satisfy their needs.9,10 The resulting design not only enables the accomplishment of the desired tasks but also ensures a meaningful and pleasurable experience.5

In 2021, the PCD methodology was implemented within the framework of the ASfarMA project to define the ideal MDSAT. The process to define the ideal MDSAT involved three steps: (a) identifying and understanding the processes, experiences and needs of the stakeholders involved; (b) defining the needs of MDSAT patients and professionals and identifying the critical points that define the ideal MDSAT; (c) co-designing solutions that will ultimately shape up the ideal MDSAT. In the last step, 21 innovative solutions were identified: 14 quick wins (requiring little effort but with a substantial positive impact) and 7 transformative solutions (having a greater impact but requiring more resources and effort). One of the seven transformative solutions included an MDSAT patient onboarding plan.6

“Onboarding” is generally used to refer to the process of integrating a new employee into an organization. The purpose of onboarding is to enable the professional to become competent and independent in performing their role, while also ensuring they understand the values of the organization. This concept has been transferred to the healthcare domain.11 Retaining a comparable meaning, the term “onboarding” is used in this study to refer to the set of actions, material and structured information delivered during the first contacts of the patient with the MDSAT. This part of the healthcare process has been identified as essential both by patients and professionals, who associate it with a high emotional burden and deem it to determine the patient-MDSAT relationship. As a result, onboarding was established as a priority solution that required action.

This study expands the preceding phase of the project and leverages previous findings in order to design an MDSAT patient onboarding process based on the needs identified by MDSAT patients and professionals.

A qualitative study was performed in a tertiary hospital using the PCD methodology. The study involved two phases: (a) a problem-centered phase; and (b) a solution-centered phase. Each of these phases was further divided into two sequential stages: a divergent approach intended to capture a wide and in-depth perspective, followed by a convergent approach designed to distil the essential elements. The four stages include Discover, Define, Develop and Validate.5

The core group included at least a professional from each specialty included in the MDSAT (allergology, pharmacy, immunology, pulmonology, otorhinolaryngology, pediatrics and psychiatry), along with four patients who were representative of the archetypes identified in the ASfarMA project6 and a PCD-expert company. Each archetype is a representation of a group of matched individuals in terms of behavior, age, comorbidities and lifestyle, as well as in terms of preferences, concerns and perceptions in relation to asthma.9 An archetype is not a stereotype or represents a particular individual, but is based on real-world patterns. The four archetypes identified include6:

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  An adolescent who wants to forget their illness and fit into his environment, which is unaware of their illness. They would like not to have a daily treatment and are concerned about the long-term effects of corticosteroid therapy. They downplay the significance of their symptoms or conceal them from others.

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  A middle-aged patient with healthy life habits who demonstrates a high level of self-demand in both personal and professional aspects of life. They are emotional and their environment overprotects them because of their illness, sometimes limiting their activities. They long to control the situation and feel anxious about experiencing unexpected exacerbations.

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  A middle-aged patient suffering from other asthma-related comorbidities that require frequent visits to different specialists. They regularly seek information about their illness and symptoms on the Internet. They would like to have easy access to healthcare professionals and feel that they are empathetic and understanding of their symptoms.

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  An advanced-age patient who has long lived with the illness and has other comorbidities affecting their quality of life. They feel like a burden to their relatives and therefore attempt to remain unnoticed. Their main sources of motivation include time with significant others, preservation of autonomy and feeling heard by healthcare professionals.

Following the PCD methodology, the stages of discovery and understanding, definition of needs, and co-creation (design) of solutions were conducted. The starting point was the information obtained in the previous stage of the ASfarMA project.6

The project involved three workshops followed by several sprint sessions.

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  First workshop (November 2022): held face-to-face with patients, healthcare professionals and PCD experts. Patient experiences with their illness before and after referral to the MDSAT were collected, placing the focus on their first contacts with the multidisciplinary care team. A Patient Experience Map was designed (a tool that thoroughly collects patient process in relation to their illness and the emotions and perceptions they feel throughout the journey). This map contributed to identifying the positive aspects and unmet needs of patients. Finally, potential solutions were developed to design the patient onboarding process.

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  The second workshop (December 2022) was held online with the healthcare professionals in the core group and the PCD group. These professionals identified the solutions previously developed in the ASfarMA project that were applicable to patient onboarding. Then, they identified ‘hotspots’ in the patient onboarding journey.

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  The third workshop (January 2022) was held online with the healthcare professionals in the core group and the PCD group. The hotspots patient onboarding process was further defined, specifying the professionals responsible for each point and the resources (artifacts) required to inform and engage (activate) patients.

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  Sprint sessions (February 2023): held online in small groups of healthcare professionals and members of the PCD group. The final content of the material was thoroughly developed.

When reporting their experience, patients expressed unfamiliarity with and anxiety about their illness (“I didn't know that this could happen to sportive people”) and its implications. Patients reported to feel vulnerable when communicating with healthcare professionals in a hierarchical patient-doctor relationship (“They've the power and you feel small” or “they're talking about me but not having a conversation”). In this context, patients adopt a skeptical stance regarding the recommendations and treatments provided by healthcare professionals. Later on their patient journey, these attitudes were reversed when conversations became bidirectional (“you start to listen because they listen to you”).

In relation to MDSAT onboarding, the needs expressed by patients included understanding their illness to gain autonomy in the management of their care; receiving personalized and coordinated care; maintaining bidirectional communication with physicians regarding their illness and treatment; having easy access to their physician in case of emergency; gaining control of their illness (“I want a life without limitations”); and reducing the use of oral corticosteroids.

In turn, healthcare professionals emphasized the need to delivery pre-defined, unified and structured information to patients, as well as hold open empathetic conversations with patients (“What concerns doctors often differs from what concerns patients, so, if questions during the consultation are too directed, these issues may not be identified”); and deliver appropriate information that helps patients lead a normal life (i.e. empowering patients, “that having a normal life is in the hands of the patients themselves”).

Based on these findings, along with those from the ASfarMA project, it was determined that the patient onboarding process should address the following needs: (a) establishing a controlled onboarding process (key professionals, points of contact, information to be delivered and the tools required [artifacts]); (b) designing an MDSAT onboarding entry point that is identifiable for patients, who should understand and appreciate what this multidisciplinary team offers; (c) defining the information to be delivered as well as how, when and who will deliver such information; (d) promoting more intense contact that strengthens the patient-doctor relationship and facilitates patient learning and engagement with MDSAT's processes, timelines, activities, and pathways).

A total of seven ASfarMA solutions previously identified as useful for patient onboarding were selected. Table 1 summarizes their title, impact-effort classification (transformative solution vs quick win), implementation planning (immediate vs short-term vs long-term) and a brief description of the solutions identified.

Table 2 depicts the onboarding ‘hotspots’ detected, the professionals involved, and the information and material required. The term “severe” was found to cause anxiety in patients. This term can be used to educate patients about asthma, adapting explanations to their prior knowledge to contextualize it and reduce anxiety.

The final design, structure and artifact contents were defined (Table 3). Artifacts: patient diary, exacerbation log book, and pre-consultation preparation sheet, inhalator information sheet and a pulmonology department information sheet are available for consultation in the Supplementary Material.

The PCD model enabled the engagement of all stakeholders in the onboarding process to better understand their views, experiences and needs and co-design comprehensive, innovative solutions. Healthcare has been traditionally linked to the two first components of the so-called “good design”, namely, performance (i.e. functionality, how well it does the task or is fit for purpose, implementation of evidence-based medicine) and engineering or organization (security and reproducibility standards safeguarding patient safety); but less to usability (esthetics of experience, the way the whole interaction with the process or product is experienced or felt).12 Incorporating experience (third component of the “good design”) does not involve replacing the other two components but rather expands them. The aim is to identify challenges and opportunities for a more effective and safer process, reduce variability, and engage patients. The needs expressed by patients included receiving education on asthma, attaining greater autonomy in self-management, and enhancing their relationship and communication with healthcare professionals. Hence, addressing these needs –the pivotal factors of patient onboarding– will contribute to improving clinical outcomes.13–16

Understanding process flow and experiences is crucial to be able to provide information at the right time and in the right place that is useful and adapted to the patient's characteristics. This will help strengthen patient-healthcare professional cooperation in the long term.17 The importance of onboarding is also highlighted by Bellei et al.,18 who selected a set of requirements about patient onboarding and welcoming that health centers of excellence should meet in the management of hidradenitis suppurativa. Requirements included implementing a standardized process; providing relevant information about the illness and guidance on how to proceed in emergency situations, and establishing a detailed referral flow and patient care. To the best of our knowledge, this is the first study to establish and design a battery of solutions for MDSAT patient onboarding.

Previous studies also identify similar needs and solutions which, although they do not explicitly refer to the moment at which they should be addressed, it would seem appropriate to plan them from the onboarding. Van Harlingen et al.19 designed a toolkit to facilitate communication and expression of preferences for patients with chronic obstructive pulmonary illness or chronic heart failure when consulting with their healthcare providers. The toolkit includes a symptom log book, along with pre-designed forms to note down questions or topics to be addressed during the consultation. Additionally, the authors underlined the importance of access to disease-related documents or informative websites. Philpot et al.20 identified several factors with a high potential to influence patient experience. These factors include providing information to patients regarding their disease, self-management, and medication, and informing on the disease stage. Some of the solutions suggested include providing pre-consultation questionnaires to identify changes in the disease; providing access to downloadable patient education material; planning key questions that should be addressed during the consultation; providing follow-up education and instructions adapted to the patient; and designing a patient-centered referral pathway. Sonney et al.21 designed an asthma essentials kit to support parent–child shared asthma management. Patients reported requiring an action plan, educational materials on asthma and inhalers, and artifacts to track triggers and symptoms, findings that are consistent with our study.

The limitations of this study lie in the fact that the experiences of patients and professionals were collected in a single center within a specific period. Therefore, as our recommendations are aimed at satisfying user needs in a specific time–space framework, other priorities may exist in other environments, considering the rapidly evolving landscape of scientific-technological research and its social impact.

Nevertheless, a rigorous qualitative research methodology was used for stakeholders to report their needs and co-design tailored solutions. We firmly believe that our findings may be useful for other MDSATs and multidisciplinary teams attending complex chronic patients, irrespectively of any potential differences with other centers or any changes in patient needs as new technological solutions emerge. Indeed, the needs and solutions suggested in this project are comparable to those identified in previous studies in different environments and periods. The solutions developed can be implemented directly or adapted to the particularities of each center. The methodology described can be a road map for other projects aimed at enhancing healthcare standards. Additionally, both the needs and solutions developed go beyond the use of technologies and should be positively approached. Hence, technological advancements will not render our solutions obsolete but will contribute to refining, enhancing or adapting them to different formats. It is also important to highlight that the involvement of all departments in the MDSAT has strengthened its multidisciplinary character and internal cohesion, while enabling the identification of strengths and weaknesses. Patient involvement in the project, including the co-design of solutions, provided valuable insights that guided the design of the patient onboarding process and the development of the supporting artifacts.

This work allowed us to design, structure, and standardize patient onboarding, providing an environment that facilitates self-management and open, empathetic, bidirectional communication between patients and healthcare professionals, in line with the essential needs expressed by both groups. These findings may be useful for other multidisciplinary care teams. The next step will be to assess the impact of the implemented solutions on healthcare quality and patient knowledge of the illness.

The results reported provide information about the needs of patients and healthcare providers in a multidisciplinary severe asthma care team regarding onboarding. In addition, we suggest a battery of solutions and co-designed tools developed using the person-centered design methodology.

These solutions and tools may help other multidisciplinary severe asthma care teams or other projects aimed at enhancing the quality of care in chronic illness.

Hilario Martínez-Barros: Writing – review & editing, Writing – original draft, Project administration, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. María Muñoz-García: Writing – review & editing, Supervision, Project administration, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Darío Antolín-Amérigo: Writing – review & editing, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Silvia Sánchez-Cuéllar: Writing – review & editing, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Ana Morales-Tirado: Writing – review & editing, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Ana de-Andrés-Martín: Writing – review & editing, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Gonzalo de-los-Santos-Granados: Writing – review & editing, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Laura Yeguas-Ramírez: Writing – review & editing, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Enrique Blitz-Castro: Writing – review & editing, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Alfonso Santamaría-Gadea: Writing – review & editing, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Belén de-la-Hoz-Caballer: Writing – review & editing, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Sagrario Martín-Aragón: Writing – review & editing, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. David González-de-Olano: Writing – review & editing, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Ana María Álvarez-Díaz: Writing – review & editing, Methodology, Investigation, Funding acquisition, Formal analysis, Data curation, Conceptualization.

The local Ethics Committee for research with medicines exempted us from the obligation to receive authorization to carry out the study, as it was a study aimed at improving healthcare standards not raising any ethical considerations. Informed consent was obtained from all participants prior to inclusion.

All authors contributed to the conception and design of the study. Hilario Martínez-Barros drafted the first version of the manuscript under the supervision of María Muñoz-García, which was critically reviewed by the other authors, who contributed to the final manuscript. The three authors approved the final version of the manuscript submitted for publication.

The authors declare that this work was funded by AstraZeneca and Sanofi.