Preventing, monitoring and treating bleeding is especially important for hemophilia patients. Previously, registration was cumbersome for patients and often resulted in incomplete and inaccurate data. The Journl Platform has made it easier for patients to register and strengthened the treatment basis for clinicians.
"I used to sit there with a piece of paper and have to write down how many units, why and how, and all that. It took a war every time, and I simply didn't get it done. This meant that, two days before I was due for a check-up, I grabbed my wife and said "Now you have to do my treatment schedule for the last six months" And then she sat and wrote it down. I couldn't remember how many bleedings I'd had in the last six months."
- Patient, Bleeding Center, Aarhus University
For several years, the Danish Hemophilia Association and treating physicians have had a desire to provide better treatment for hemophiliacs. Previously, the country's bleeding centers collected patient data via a paper form. In the form, patients had to fill in information about medication intake and bleeding. But it was cumbersome.
"Journl Platform makes it easier for us to guide patients and provide optimal treatment. Without the app, it takes us an enormous amount of time to get a picture of the patient's situation. A lot can be lost because patients have forgotten what happened six months ago. With the app, the picture is there instantly. Here we can understand the situation at a glance"
- Eva Funding, Bleeding Center, Rigshospitalet
There are around 1,000 patients in Denmark with hemophilia. You can be diagnosed with severe, moderate or mild degrees and there are different types of hemophilia. Common to all patients is that hemophilia is a chronic disease that requires registration and medication.
The Danish Haemophilia Association wanted to optimize patient registration of medication and bleeding in order to improve the individual patient's treatment plan. In a project supported by the Danish Ministry of Health, the Danish Hemophilia Association joined forces with the hemophilia centers at Aarhus University Hospital and Rigshospitalet, Center for Telemedicine and Journl to solve the challenge.
The solution was concretized in an app for patients and a clinician tool for healthcare professionals - the Journl Platform. Here, patients can record their bleeding and medication intake on their smartphone - as they happen. And clinicians can continuously see the patients' status and progress on their screen.
The solution has been rolled out across the country and is now in operation at the country's two bleeding centers at Aarhus University Hospital and Rigshospitalet. The solution gives clinicians a better and more valid overview - even before the consultation. They can spend their time on the essentials. They can treat on an adequate basis. And they can meet the patient where the patient is.
"The app provides the opportunity to increase the quality of home treatment while making the treatment more efficient and tailored to the individual patient's needs"
- Lone Hvitfeldt Poulsen, Bleeding Center, Aarhus University Hospital
Patients get the overview that gives them confidence and insight into their own journey. They gain a stronger foundation to engage and act proactively. And they can meet the clinician with a new perspective.
"The app is the best thing that has happened to me in many years"
- Patient, Bleeding Center, Aarhus University Hospital
Prior to the project, Danmarks Bløderforening prepared a needs analysis and an economic analysis. The analyses showed a need for:
They also showed that both bleeders and healthcare professionals requested more support than the paper forms provided. And one of the main conclusions of the economic potential analysis was that there is an accumulated financial gain of approximately DKK 12 million over a five-year period by supporting the registration of bleeding and medicine consumption digitally.
"As a bleeder, you are very much alone with the responsibility for your illness and your treatment. With the bleeding app, individual bleeders now have a much better starting point for documenting their treatment. By being able to register both medication and bleeding digitally, both the bleeder and the doctor gain a shared understanding of how the treatment works in everyday life. And from a societal perspective, it is also important to have documentation that the expensive treatment works"
- Jacob Bech Andersen, Chairman, Danish Bleeding Disorders Association
Meet Martin, who has Hemophilia A.
The app makes a direct link between bleeding and treatments that was previously difficult to achieve with paper charts. For hemophilia patients, reducing bleeding is crucial because it breaks down the patient's joints and can eventually reduce their mobility.
The new possibilities offered by the Journl Platform are not only used for an overview, but also for shared insights and a better basis for dialog between clinician and patient. The clinician may have prepared before the consultation, and the patient and clinician can sit together and look at the progress on a screen.
"I can definitely feel a difference at the consultation. When I come in, we can take the last six months and talk about it. Whereas before, with the forms, the doctor had to flip back and forth between all the pages and find what I had written. It didn't give a proper picture"
- Patient, Bleeding Centers, Aarhus University Hospital
For many patients, taking medication is such an integral part of their everyday life that it's the equivalent of brushing their teeth. Journl App has been developed with a focus on supporting patients' lifestyles. All functions are made as simple as possible. Patients are guided through the different registration types to minimize doubts and errors. Patients report that this increases their motivation to record and the quality of the recorded data.
"Before we got the app, it was too much work to register medication. I have only started registering my medicine after I got the app"
- Patient, Bleeding Centers, Aarhus University Hospital
The project on better treatment for softer people started in November 2017. The project was further developed and is now a CE-marked product. There are high demands on the quality of products in the medical software industry. The solution meets all regulatory requirements for medical devices and all requirements for data security. Journl covers the entire hemophilia area and the solution is in operation at the country's two bleeding centers at Aarhus University Hospital and Rigshospitalet.
"Our most important task is to make it easier for patients and clinicians to exchange the right data in the right context. Especially in the bleeding area, it's important to look at how we can enrich the data so that we get the best possible treatment effect out of the expensive medicine. This has been achieved after a process with invaluable feedback from patients and clinicians - and in collaboration with the Danish Hemophilia Association and the Center for Telemedicine. We have tested and tested to build a solid CE-marked product that can withstand the pressure test of being in production in hospitals"
- Michael Thabang Jensen, CPO, Journl
Journl is ISO 13485 certified and approved to supply medical devices and has already further developed the technology for other patient groups - including incontinence and cancer patients.
Read more about haemophilia at the Danish Haemophilia Association
- and about the solution at Central Denmark Region
Bleeding Center, Aarhus University Hospital
Bleeding Center, Rigshospitalet
The Danish Haemophilia Association
