e-MOTIPH: Patient Journey Identification and Improvement Initiatives in Patients with Schizophrenia and Persistent Symptoms

e-MOTIPH project is starting to generate the first results. This project aims to develop an eHealth smart solution for mental health and management and empowerment of patients with schizophrenia and persistent symptoms. The project is led by Grupo Pulso, with the participation of the Santa Creu and Sant Pau Hospital, and the Fundació TIC Salut Social, as well as other international organizations, with funding from the EUROSTARS scholarship (EUREKA program and European Commission 2020 horizon).

During the first phase of the project, Fundació TIC Salut Social was responsible for identifying what is known as a Patient Journey, or the study of the interactions between the patient, the healthcare system, professionals and caregivers under a point from the point of view of experience, in order to identify needs and improvement points associated with healthcare intervention. This article sets out the main conclusions of this initial study.

User archetypes

One of the results of Patient Journey’s activities has been to define archetypes of people with schizophrenia and persistent symptomatology. This archetype allows us to identify differences between the types of patients regarding their approach to the disease. This differentiation allows to design more personalized services to the needs of the person. Aspects such as disease awareness, acceptance, adherence to treatment, dependence, social isolation or technological affinity are elements that are analyzed to define the “type” of patients.

Stages of the Journey Patient

Another of the aspects identified is the “stages” of the patient’s journey. All those interactions between the patient and the system are analyzed, such as diagnosis, admission, therapeutic guidelines, disease control, exacerbations or risk behaviors. For each of the stages the following elements are analyzed:

• Patient expectations
• Caregiver expectations
• Assessment of the experience at this stage (patient and caregiver)
• Importance of the moment
• Communication channels available
• Stage improvement initiatives (with levers and barriers)
• Indicators of experience

Based on an analysis of these stages and the patient and caregiver’s experience, different improvement initiatives were identified, described below.

Identified improvement initiatives

As a result of the activities carried out, 26 initiatives were identified in the participatory sessions with professionals, people with schizophrenia and persistent symptoms, caregivers and experts in technological trends in the field of mental health and mental health. classified based on 7 major thematic areas: information and awareness of citizenship, health education, prediction and prevention, therapeutic interventions, comprehensive management of the disease, humanization of care and support among peers.

After analyzing through an effort / benefit matrix, some of the best-rated initiatives are:

Humanization of hospitalization, the continuum of care and communication of diagnosis and treatment: the perception of treatment in the hospitalization phase or the communication of the diagnosis are aspects that are evaluated negatively by the patients that they should approach to give a more humane treatment to the patient. Other cases involving security forces were also identified as points for improvement.

Reinforcement of psychological support for the patient and caregiver support strategies: reinforcing support through face-to-face or telematics is presented as an opportunity to improve the capacity for self-management and knowledge of the illness. Caregivers also need to strengthen the support they receive, as the burden they may face may also have implications for their mental health.

Recommendations for personalized cultural, recreational, and occupational activities: Establishing tools to offer diverse activities to patients can improve inclusion and patient satisfaction with their quality of life. Many times the offer of activities is very limited, and it does not take into account the diversity of people involved, who may have very different needs.

Conclusions

The findings of this preliminary study have identified improvement initiatives that impact not only aspects of clinical intervention but also other areas such as citizen awareness, more humanistic aspects of care, and support. through the networks and the community. It is important, therefore, to generate a new culture of approaching health conditions, which takes into account not only the own pathology itself, but also all the areas of the day to day, with a more holistic view on health mind focused on better self-management and empowerment.

With the participation of: