Annual report

There has also been a gradual rise in the demand for care by international patients, despit the complex geopolitical situation. The forecast for 2024 is a moderate growth (5%) of international patients, the consolidation of recent healthcare projects (SJD Pediatric Cancer Center Barcelona, Casa de Sofia and Child and Adolescent Mental Health) and the work on other new projects that target the care of rare diseases (Congenital Cardiopathy Centre, the Únicas SJD Building and the Advanced Therapies Platform).

Our offering of high-complexity procedures has been widened thanks to the incorporation of augmented reality in surgical procedures, the approval of 3D surgical planning and new at-home healthcare programmes in high-complexity oncology and mental health cases.

• Transcranial magnetic stimulation system: The Pediatric Neuromodulation Unit has incorporated a new transcranial magnetic stimulation system into their unit. This new diagnostic and therapeutic technology can generate a 3D model of internal brain structures, creating a functional map of the eloquent motor and linguistic regions. This map can be transferred to the surgical planning station and then, if needs be, to surgical neuronavigation. From a therapeutic perspective, this technology is used to treat neuropsychiatric symptoms, neurodevelopmental symptoms, and those arising from neurovascular damage.
• Consolidating the role of the hospital pediatrician: The hospital pediatrician assumes responsibility for medical decisions made about patients admitted to the surgical department. In 2022, we evaluated the proof of concept carried out in the neurosurgery, general surgery and orthopedics and traumatology wards. The results support the suitability and proposed expansion of this new care programme that seeks to provide surgical patients with comprehensive care and which focuses a large part of its efforts on managing pain and anxiety.
• Sports medicine as a therapeutic option: The Sports Medicine Department, created in 2014, offers targeted services for both the general population and also amateur sports players. It involves the use of physical activity and sport as a preventative and therapeutic measure in healthcare. As such, having a sports therapist's perspective at the SJD Barcelona Children's Hospital can only be beneficial to patients and staff. During 2022, this department supported and worked alongside several other clinical departments, both on a preventative and a therapeutic level: Endocrinology, Women’s Health, Cardiology, Mental Health, Oncology and Health Education.

Guide for teenagers transitioning to adult hospital

The Hospital has published the A10! Digital Transition Guide, a tool for pediatric patients and their families to help them through the transition to adult hospital. 1,497 transfers had taken place up until October 2022, 50% of which corresponded to patients with rare diseases. The main receiving hospitals were Hospital Clínic Barcelona, Bellvitge, Vall d’Hebron and Sant Pau.

Throughout 2022, new ties have been established with other adult hospitals (Parc Taulí, Mataró or Granollers, among others) and other institutions (Aspace). Among other highlights, we have created specific protocols and carried out various group visits for patients and their families to both the pediatric and adult hospitals. We have also assessed the programme from three perspectives: the patient experience; the professional experience and the institutional vision, which have allowed us to develop a new improvement action plan.

Spiritual care (SAER)

The Spiritual and Religious Care Service (SAER) has been working hard throughout 2022 to improve its service offering and help raise awareness. On a care level, it has increased activity in more complex areas of the Hospital, such as the Neonatal Unit, La Casa de Sofía, the Palliative Care and Chronic Complex Patients Department and also in the PCCB. The huge progress made by integrating spiritual care into basic healthcare provision is clear to see. Plus, the SAER organises two in-person meditation programmes at the Hospital, as well as the Sonidos del Silencio (Sounds of Silence) SJD podcast, developed in collaboration with the Marketing and Communications Department. Finally, the SAER service brings huge educational and investigative value to the Hospital.

Social work

The Social Work Service has helped a total of 3,545 families (over 11,763 visits). The SJD Obra Social has helped 983 different families by providing food, transport, interpreters, orthodontic treatment, or paying the costs of other health needs that are not covered by public health.

Furthermore, a collaboration agreement has been set up between the SJD Barcelona Children's Hospital, the University Hospital of Bellvitge and other associations of patients with inherited retinal dystrophy, with the aim of providing social support to families with children affected by this disease. Moreover, we held the first edition of the training course in Infancy and Health: Social and Healthcare in the Hospital Context (Aula de Pediatría SJD [SJD Pediatrics Classroom]).

Hospital Amic

• Child Life: In 2022, the Child Life Service helped 2,333 patients and families in the hospital, and another 111 patients and families in La Casa de Sofía. The team has also expanded to the PCCB, where they have integrated a Child Life member into the team, participating in hospital huddles and in transfers to the Day Hospital. They have carried over various activities from Hospital Amic (art, music, clowns) and, as a new addition, introduced canine assisted therapy in the Outpatient Department. They have also launched new group activities in art and music, originally from the ‘La Fábrica de Magia [The Magic Factory]’ volunteering programme. As well as using magic as a therapeutic resource, both on pediatric wards and in the PCCB, children with retinoblastomas in the Ambulatory Surgery Department (UCA) are now also able to practice yoga. At La Casa de Sofía, we have also added music to the programme (in particular, our violin-playing pediatrician), as well as art, clowns, and game workshops run by volunteers.
• Volunteering: The volunteer team has reached 300 members, consolidating their work at La Casa de Sofía and the PCCB. We launched other new activities and programmes in 2022, such as: ‘Hospitality’, to detect the individual needs of patients we were welcoming to the Hospital; ‘Summer Youth Volunteers’, for teenagers aged 16-18 who want to help out at the PCCB; ‘Music in the hall’, where music students, patients, families and our faculty members liven up the Hospital reception with music; and even the celebration of the 1st edition of book editors inspired by patient experiences in the Hospital. A particularly significant project was ‘La Fábrica de Magia [The Magic Factory]’, which seeks to ensure all patients have the right to play and fun. To do this, volunteers and collaborators donate their time and skills to run fun, playful activities. Between February and October 2022, over 88 workshops took place, with 598 patients and 615 parents taking part.

Flat Management-style system

• Huddles strategy, a system that uses short meetings to facilitate multidisciplinary discussion of a situation in any of the 23 departments across the Hospital.
• Grupo Operaciones Asistenciales [Healthcare Operations Group] (GOA), a coordination effort in which professionals from various healthcare fields come together to discuss, agree on and implement processes, with a view to both activity level and quality. This model has been replicated in larger areas such as Mental Health and the PCCB.
• Healthcare hub, consisting of weekly meetings with upper management and heads of departments, nursing, and the Planning, Patient Experience and Quality, and International departments.

Clinical safety

• Promoting safe practice (considering aspects ranging from correct patient identification to medication safety).
• Prevention and control of infection (with hand-washing being a key element).
• Safe surgery (to plan out and ensure adherence to checklists during scheduled surgical procedures).
• Safety incident report management (with a decentralised model, multidisciplinary analysis and professional response).

EMC²

The EMC² improvement model has been just as active, with 2022 seeing new additions to the management teams of both Innovation and People and Values, bringing fresh perspectives to our work. One of our newest innovations has been incorporating quicker methodology to develop smaller-scale projects.

We have workde on 59 improvement plans in line with the EMC² model, ranging from the Respir programme for families, to care in A&E.

Budget balancing

Yearly billing in 2022 has reached 299 million Euros, with a continually balanced cash flow. Staff pay has increased by 3.5%. This increase in costs has been financed by a rise in CatSalut tariffs (+3.49%).

Diversifying funding

Our strategy to diversify our funding routes helps us keep a balanced cash flow: launching the Hospital Friend programme, renovating the technology park, maintaining high levels of research activity, and running charitable projects.

Creation of the Data Office

The Hospital has created the Data Office (DAM&GO), a body to manage the efficient organisation of Hospital data in response to growing healthcare, administrative and investigative data needs.

At the Day Hospital, there was a daily average of 30 appointments, 48 tests and six operations in the operating theatres of the SJD Pediatric Cancer Center Barcelona. Over the year, the number of patients admitted in unofficial circumstances increased, whilst the number of private international patients dropped due to the fall in patients with neuroblastoma. The satisfaction of patients and their families still remained at very high levels (NPS of 87.07), thanks to the comprehensive care model. Insofar as infrastructures are concerned, a Pharmacy Unit, a Nuclear Medicine Unit and a second operating theatre (BQ17) were opened.

The centre has rolled out new services such as ventilators for the patients admitted there, the outpatients programme for adjusting respiratory support devices and putting dressings on patients with epidermolysis bullosa. Other actions include the recruitment of a new nursing manager and the programme for identifying vulnerable families found to be at risk by social services.

This project has increased what the Acompanya’m is able to offer by enhancing support thanks to the availability of assisted living facilities that have been opened. The primary objective is for young people formerly in care to become totally emancipated by encouraging their deinstitutionalisation in a flat of their own, raising awareness in families and communities abit the problems of these young people who are highly vulnerable, at the risk of revictimization and with low social capital. The project has the support of more than 30 healthcare professionals from Acompanya’m, the Suara Cooperative, the SJD Research Foundation and the University of Vic-Central Catalonia.

Recruitment has also started for the clinical trial directed by Susana Rives, who uses CAR-T19 cells currently made in a partnership between Barcelona’s Hospital Clínic and SJD Barcelona Children's Hospital. This is a phase 2 multicentre trial that is focusing on relapsed and refractory paediatric patients with acute B CD19+ lymphoid leukemia. It is supervised by the SJD Research Institute and is subsidised by the Carlos III Health Institute.

The funding received will smooth the path for setting up a platform for advanced therapies and will bolster the IRSJD’s position as a relevant stakeholder in Spain in this field.

In 2023, almost 900 healthcare professionals were trained. In addition, training courses were promoted that concentrated on preceptorship, which gives students an immersive experience in a unit or enables them to learn about a specific disease for a limited period of time. These programmes are carried out in the Hospital’s healthcare settings such as its Rheumatology, Epilepsy, Orthopaedic Surgery and Maxillofacial Surgery departments. A number of conferences and webinars have been run about specific diseases: CONendo (endocrinology), general paediatrics and type I diabetes are just a few examples.

In addition to seeing through the whole of the process of migrating to the new platform, contents in all formats continued to be posted on the portal at the same rate as in the past, which resulted in 150 new publications.

Furthermore, the recipes that SJD concocts together with the Alícia Foundation were tweaked in 2023. The more modern and dynamic format makes it easier to see the contents displayed and better adapts to the formats used by social media.

In the field of the simulation workspace design and work processes (SIMTest), five projects were completed: double cubicles in the day hospital, nuclear medicine rooms, nuclear medicine process for epilepsy, the second stage of AICCELERATE, the joint C2P2 project, and the UCB clinical trial. 

Furthermore, in order to respond to some specific simulations and enhance their reality, work was done in 2023 on a number of partial models (SIMEngineering).

An APN is an expert nurse, trained in complex decision-making skills who also has expertise in advanced techniques. In 2023, 10 clinical assistants, one lead nurse and five advanced practice nurses were recruited. The suitability of introducing other professional roles also continued to be examined.

Support was also given to four students thanks the the Young Talent programme, which enables them gain work experience at the departments of their choice at the Hospital. Lastly, the Mother and Child Scholarship programme was launched for student nurses at the Campus. Each student is awarded €12,600 and includes a two-year full-time employment contract.

On a broader level for the rest of the staff, SJD took part in the JoBarcelona event, which is a place where companies, universities and professionals can meet young people who have completed their training. It also engages in Esplugues Talent that is intended to find talent from among secondary school and other higher education students, whilst Innobus is a project that targets young people coming to the end of their degree course who are looking for their first opportunity in the job market.

Emphasis is also placed on the culture of working people so that they are able to concentrate their attention on patients and their families. A total of 49 projects were completed over 2023. The teams involved in User Support and Patient Safety were also joined by new recruits in 2023. Amongst other projects carried out, it is worth highlighting SJD’s Family Respite programme, the Staff Benefits programme, the improved organisation of the Ear, Nose and Throat, and the Orthopaedic Surgery departments, and the improved patient experience in the Haemophilia, Cancer Survivers and Sickle-Cell Anaemia units.

This new method makes it possible for concerns to be expressed in numerous ways (in person, email, telephone, online, etc.), give priority to the handling of complaints that have had an impact on patients and their families, pass on words of thanks to staff and department that treat patients, set up an orderly map of surveys depending on the requirements of the information to be obtained, devise more suitable types of questionnaire and draw up reports with results. Furthermore, the User Support Unit has been given additional support by a sociologist specialised in market analysis and research

This his has made it possible to roll out the wide range of associated actions: safe practices, the secondary victims programme and the involvement of families as stakeholders. In addition, in terms of training, a second refresher course was given on clinical safety, which had extremely high attendance figures.

Other actions carried out in 2023 included a review and redesign of processes using the EMC² learning method and the roll-out of a course intended for healthcare professionals, in the shape of a second refresher course that was given on clinical safety.

The new portal will integrate the e-consultation tool (eConsulta) with the Health Care Information System (HCIS). This will allow staff to receive, look up, reply and record asynchronous messages that they send directly to patients from the HCIS. Furthermore, over 60 functionalities have been added to encourage interactions with the Hospital, such as managing appointments, signing up to the portal online, tracking and requesting medical reports, and processing other administrative procedures.

Amongst other features, the following can he highlighted:

• The drawing up of different online forms, scheduling appointments, medical and surgical admissions, administrative procedures, medical documentation, handling complaints and user support.
• The development of new functionalities in CRM in order to update the way patients and caregivers are contacted, patient alert messages sent, alerts and internal posts published, etc.
• The customisation of text messages for appointments and the development of a database for handling the Contact Centre’s knowledge base.

Impact3 

Impact3 is Únicas’ first digital project, which is promoted and run by SJD, that consists in setting up a network of six hospitals to share information about patients who have rare diseases. The minimum datasets have been defined in order to post them on SDJ’s information platform and to anonymously share them on this centralised hospital network. 

Únicas-information 

Overseen by the Secretariat General for Digital Health of the Ministry of Health in a scientific partnership with SDJ, work on the development of the Únicas technology platform was started. To do so, a group was set up of more than 175 healthcare professions specialised in rare diseases and five work groups have been set up to deal with healthcare, patients, diagnostics, advanced drugs and therapies, as well as with classification and standardisation.

A multidisciplinary team has been set up and 332 people (228 family members and 104 members of staff) have taken part in this piece of research. Based on the four cornerstones to promote the Menni culture – hospitality, the ability to learn, customisation and flexibility – a number of courses of action have been implemented:

• Menni conversations (a time to bring about reflection and well-being, and to put across how to spread this to other people).
• Reward programme (specific public recognition of Menni attitudes and actions).

The SAER has been at the forefront in creating new group therapy programmes, together with the Social Work Service, in order to respond to the needs of patients with cancer from Latin America who come to SJD feeling extremely fragile and vulnerable.

In so far as teaching is concerned, the 7th edition of the Spirituality in Clinical Practice refresher course was run for around 60 students. It is also worth pointing out the SAER’s involvement in the post graduate and master’s degree courses specialised in comprehensive care, palliative care and paediatrics, in addition to in lifelong learning training programmes in several scientific societies.

Amongst the new actions undertaken, it is worth highlighting the extension of the work of the puppeteers in the outpatients clinics, the start of similar activities at the SJD Pediatric Cancer Center Barcelona, the introduction of dogs at the outpatients clinics, and the launch of choirs and art groups for hospitalised children.

At Casa de Sofia, the Theodora Foundation continued its work (hospital clowns), art activities were arranged for patients in palliative care, CTAC gave dog-assisted therapies and the Ressò association provided music therapy. A model for providing schooling at the Hospital has also been set up.

A team of volunteers encourage play that is run from what is called the Magic Factory. Amongst its other activities, it gives more individual magic shows and shadow workshops than ever before, in which more than 2,500 patients and their families have taken part.

In 2023, the Child Life programme was introduced at the SJD Pediatric Cancer Center Barcelona and Casa de Sofia. At SJD, new lines of work have been put in place, amongst which it is worth highlighting the pre-surgery preparation of patients in the Neurosurgery, Retinoblastoma and Epilepsy and HSCT units. Other new programmes were rolled out at the NICU, PICU and outpatient clinics, such as the PICU Diary project and the Siblings PICU Hospitalisation programme. Finally, in coordination with the psychosocial care team, support was given to patients and their families on the haemodialysis programme.

Charity projects run by SJD

One again this year, SJD staged the Inseparable Gala and the SJD Barcelona Children's Hospital Charity Night, in the framework of the Alma Festival. In addition, the Brave Children’s Music Festival was held, which was put on to mark the 50th anniversary of the Hospital moving from its old premises on Avinguda Diagonal in Barcelona to its current site in Esplugues de Llobregat.

Charity events organised by civil society

A total of 273 charity events were held in 2023 to raise funds for SJD. Most of the money was earmarked for research, but healthcare and humanisation programmes were also funded. A total of €1,606,000 was donated. Besides this, events run by many family associations managed to raise an additional amount of almost one million euros. Amongst many other family and private group events, the following stood out: Nights of the Full Moon in Sitges, the paddle tennis tournament #forçamiquel, Give me Wings, a jumble sale, the Charity Zambomba Festival, A Dream Christmas, the Charity Masroig Wine Fair, the Quimfants event to raise money for children with cancer, the El Prat Rotary Club Charity Race, the Rosaweek paddle tennis tournament, the Warriors Walk – In Rememberance of Jaume Bou, Shurikan Star, We’re Walking for You, Pol!, the Georgina de Miguel Antoja Tennis Championships, and the pro-PKU races, Run for Them and MTB for Them.

Twinning programme with Saint John of God Catholic Hospital in Sierra Leone

ith the support of foundations, businesses, private donors and SJD staff, once again this year the following programmes have been carried out:

• Sponsor the treatment of a child in Sierra Leone.
• Exchange of paediatric residents at the hospital in Lunsar (Sierra Leone).
• Nutritional rehabilitation programme.
• ICARIA research project.

Cuida’m (Take Care of Me) programme

In 2023, 25 children we able to receive highly specialised surgical treatment thanks to this programme. The patients came from the following countries: Algeria, Bolivia, Dominica, El Salvador, The Gambia, India, Madagascar, Morocco, Nicaragua, Pakistan, Peru, Senegal, Sierra Leone, Tanzania and Venezuela. 

Since 2004, when the programme first started, Cuida’m has treated 420 cases involving families from 50-plus different countries.

It currently has the ISO 14.001 and EMAS environmental management certifications, and the SJD Pediatric Cancer Center Barcelona has obtained the BREEAM sustainability certification.

In order to reduce its carbon footprint, a number of actions have been carried out such as encouraging telemedicine, reducing the use of pressurised inhalers, purchasing drugs that have low carbon emissions and capturing anaesthetic gases. In 2023, investments were also made to improve the facilities’ energy efficiency. Thus, the Hospital’s façade was refurbished, which has resulted in energy savings of 30%.

The Hospital’s environmental strategy has given rise to the setting up of the SJD Sustainable Development Goals Committee, the revival of the Environmental Committee and the signing up to voluntary arrangements of the Government of Catalonia’s Catalan Office for Climate Change.