Inflammatory bowel disease rarely follows the calendar. The patient may feel well at a scheduled follow-up visit and deteriorate a few weeks later. At the same time, patients with stable disease may be called in for check-ups that are not actually necessary.
Hope makes it possible to monitor the disease between visits. The patient carries out home tests and screenings according to their integrated self-care plan, while
Hope tracks how disease activity changes over time. Follow-up care can thus be driven by the patient's current needs rather than the next scheduled appointment.
”Previously, it was up to me to contact healthcare, and I never really knew when the time was right. Now, I can share how I’m doing from home, and Hope keeps track of any changes. When action is needed, healthcare reaches out to me.”
Patient with inflammatory bowel disease
IBD HOME is built on eight treatment steps that are configured based on the healthcare provider's care programme and the patient's individual treatment.
When disease activity changes, Hope’s AI support updates the self-care plan with the appropriate treatment step. Each step includes the appropriate medication, dosage, testing intervals, screening and next actions. The patient does not have to determine when treatment needs to change or when to contact healthcare.
In Hope, the patient can always see what applies right now, why, and what the next step is.
Patients carry out home tests, screening and pharmacological treatment at home and receive feedback after each activity.
Hope goes beyond showing test results. It helps the patient understand what the results mean, how their disease activity is changing and what happens next.
This gives the patient a more active role in their care and greater reassurance between visits.
”We have gone from calendar-driven to need-driven care. Hope continuously monitors our patients and alerts us when action is needed. This means I can focus my time on the patients who need my attention most.”
IBD nurse specialist
When patients with stable disease are monitored at home, time is freed up for patients who require healthcare interventions.
Patients with early signs of deterioration can be identified earlier and prioritised before the disease has time to develop into a flare-up.
It provides more personalised treatment and allows healthcare staff to use their time where it does the most good.
Hope is used for both healthcare and clinical research.
If the patient takes part in a study, the study activities are integrated into the same cohesive self-care plan. The patient follows one process, while healthcare and research work within their respective processes using the information and functions that belong to their remit.
It makes it possible to conduct healthcare and clinical research in parallel without creating additional systems or processes for the patient.
Children with cystic fibrosis require regular follow-up by multiple professions and departments. An annual review can involve up to 14 activities, tests, examinations and other procedures – several of them outside the CF clinic.
The patients also come from other regions and need to be able to complete as much as possible during the same trip. At the same time, the planning needs to take into account the child's schooling, the family's availability, geographical distances and the fact that certain examinations require preparation, rest or a specific sequence.
What feels like a cohesive visit for the family is therefore a highly complex planning task for healthcare services.
The healthcare staff describe the most important difference like this:
”What was previously an almost impossible puzzle we can now plan several months in advance. But the biggest difference is the peace of mind. Hope holds the whole process together and we know that nothing important is missed.”
Viktoria Mellqvist, medical secretary, and Frida Lundqvist, nurse, Paediatric Medicine, Queen Silvia Children's Hospital
The doctor records in Hope which appointments, examinations and procedures are to be carried out. The medical secretary adds when the patient and the guardian can attend and other conditions that need to be included in the planning.
Hope’s AI assistant coordinates the prescribed appointments, examinations and procedures with available times, resources, locations, transfers, preparations and rest requirements, and creates a complete plan for the entire visit. Healthcare professionals can immediately see whether the plan works or whether another day would be more suitable.
The result is one comprehensive plan for the entire visit – not a series of separate bookings.
The complete visit plan is displayed in the patient’s comprehensive self-care plan. The patient and parent can see the time and location of each appointment, examination and procedure, the order in which they will take place, and the time allocated for transfers, preparations and rest.
”We have gone from hard-to-navigate planning to being able to see directly how the whole visit comes together.”
Marcus Svedberg, Consultant Paediatrician, Paediatric Medicine, Queen Silvia Children's Hospital
Not all activities need to take place at the CF clinic. Hope combines in-person visits, video consultations, examinations at other units and remote follow-up within the same comprehensive care process.
The patient and the parent are working within a coordinated self-care plan that brings together drug treatment, inhalations, spirometry, measurements, forms, physical activity, video meetings, chat and planned visits.
This means that things the child and family can do at home can actually be done at home. Physical visits can instead be used for what truly requires the presence of healthcare professionals.
Sahlgrenska's evaluation of digi-physical care illustrated that the combination of digital and physical visits was as effective as purely physical care and provided increased flexibility and the opportunity for more personalised care.
The patient and parent indicate when they are available and then receive one complete plan with the time and location of each appointment and examination.
In the self-care plan, the family can see what needs to be done before the visit, what happens during the day and what needs to be done when they get home. Instructions, activities and contact with healthcare services are gathered in one place.
The child and parent do not have to keep track of separate bookings, instructions and contact points themselves. Hope brings everything together for them.
Healthcare professionals previously had to search for available times across multiple calendars, coordinate different professions and departments, and piece the entire visit together step by step.
Hope replaces manual planning and shows when and where each activity should take place. This makes it possible to plan further ahead, adjust the plan as circumstances change, while maintaining a clear overview of the entire care process.
Booking time has been reduced by 70%, planning time for the annual review by 71%, and preparation time for healthcare professionals by 85%.
The number of in-person visits has been reduced by 40–45%, while adherence to the self-care plan has exceeded 80%.
The cost-benefit analysis shows a net benefit of SEK 3.46 per invested krona over six years. However, the benefit is not just about finances. Less time is spent on coordinating care, leaving more time for the child and family.
Healthcare and ADDI continue to develop the care process together. New problems are identified, solutions are configured in Hope and the impact is evaluated. This means that each new version is not simply an update to the system – it is designed to deliver measurably better care.
Retinopathy of prematurity is one of healthcare's most time-critical care processes. Every examination, assessment and treatment must be carried out within the correct time window to reduce the risk of permanent visual impairment.
The physician enters the examination results directly into Hope. Hope’s AI assistant calculates the child’s risk and provides clinical decision support on what should happen next – continued screening, treatment or discharge – and when the next action should take place.
Healthcare professionals can see the information behind the proposed action and make the clinical decision. At the same time, Hope automates date and age calculations, documentation and planning.
”The examinations and treatments are extremely time-critical. With Hope, we have optimised our resources and reduced the risk of outcomes ranging from visual impairment to blindness caused by ROP. TThis should have been available a long time ago.”
Ann Hellström, Professor in Paediatric Ophthalmology, Queen Silvia Children's Hospital
Children with ROP are often cared for across care unit, hospital and regional boundaries.
With Hope, screening images, examination results and clinical information can be shared between authorised healthcare professionals. When a second opinion is needed, specialists at different hospitals can assess the case together and plan further treatment as part of the national highly specialised care programme.
The child does not need a new care process when care is transferred across organisational boundaries. The information and continued care follow the child across organisational boundaries as well.
Through ParentROP, the parent becomes an active partner in the child's care.
The child's self-care plan brings together infusion therapy, follow-up visits and planned activities. The parent logs completed treatment, receives notifications via, for example, SMS or push notifications, and can follow the child's clinical condition and treatment over time.
It becomes clear what needs to be done at home, when the next examination will take place and how the care will continue – even between hospital visits.
"Home care supported by Hope was much better than staying in hospital. It was also reassuring to have all the information on my phone – I could always go back and check it whenever I needed to.”
Parent of a child with ROP
ROP also illustrates that healthcare and clinical research do not need to be managed in two separate systems.
Hope is also used for the clinical research in the DROPROP study, bringing twelve regions into the same research process with digital consent, randomisation, eCRFs, structured data collection, notifications and data exports.
The study participant follows their study activities digitally, while healthcare professionals and researchers work within their respective processes and access rights. **Research data is kept separate from healthcare data, while both are managed in Hope.
When the same information is needed in healthcare, research and the quality register, it should not have to be recorded multiple times.
Hope identifies the data to be transferred to the SwedROP quality register and sends it automatically. Access rights determine which information and features each user can access.
Clinical care, national collaboration, quality registries and research can all be managed in Hope, without duplicating administrative processes.
At Queen Silvia Children's Hospital, Hope has created a comprehensible and traceable care process for screening, treatment, follow-up, national collaboration and clinical research.
For the doctor, the time spent on examination, documentation and decisions on the next steps in treatment has decreased from approximately 40 to 3 minutes. That corresponds to around 360 freed-up doctor hours per year.
The nurses' planning time has decreased from approximately 15 to 5 minutes per examination, and the secretaries' administration and documentation from about 10 to 3 minutes.
At the same time, every child is monitored in accordance with the national guidelines for ROP. This reduces the risk of screening, follow-up or treatment being delayed or missed – which is particularly crucial when the time to treatment can determine the child's future vision.
The next step is to supplement the clinical decision support system with additional AI-supporting prediction models. The goal is to reduce the number of screening examinations by approximately 17 percent, with a long-term potential of around 30 percent for the children who are screened.
Fewer unnecessary investigations mean less strain for the child and the guardian – and more time for the children who need care the most.
