‘Our app Je Me GèRe gives patients greater autonomy’

In 2016, UCL St. Luc developed an application for cancer patients receiving oral therapy called “Je Me GèRe” (“Self-management app”, JMGR), with the support of Foundation against Cancer. The purpose of the application: to better inform patients about their treatment and gather their feedback so as to gain more precise insight into the disease’s impact.

Meanwhile, a new version is available, in the form of JMGR 2.0, which builds on the experiences gathered with JMGR 1.0 and adds a couple of new features. The JMGR project is led by Frédéric Maddalena, an oncology care coordinator at the Institut Roi Albert II, where he also manages a team of 18 coordinators, and sits on the executive board of All.Can Belgium.

Want to know more about the oncology care coordinator’s role? Read this interview with Sylvie Lambin from Institut Roi Albert II.

Frédéric, let’s start at the beginning: what drove you to develop the JMGR application at the time? What problem or need did you want to solve with the app?

The app’s development was rooted in the paradigm shift towards “more mobile care”. The early 2010s saw a boom in oral oncology therapy. This development led to a double shift: first from hospital care to outpatient care, and then from outpatient care to increased care at home.

Care at home has brought and continues to bring significant advantages for patients, as it allow them to maintain much greater autonomy. At the same time, it presents us with new challenges, as healthcare teams have much less control over what is happening at a patient’s home. We must therefore create the proper framework to ensure the therapy’s quality and safety.

Together with this shift towards more mobile care, we saw a strong increase in the use of smartphones, as more and more people bought smartphones and started using them for all sorts of things: looking up information, comparing products, etc. And that’s how we came up with the idea for JMGR: a smartphone app that allows us to provide high-quality and safe remote support to cancer patients in monitoring their oral therapy.

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What kind of support does JMGR allow for?

We use the app as a tool to strengthen patients’ health literacy. Proper therapy compliance often starts with a good understanding of both the therapy and the healthcare system, so we provide patients with general information about their treatment via the app, for example about its impact on their well-being, physical activity, fatigue, sexuality, etc.

We also provide tailored information, particularly about side effects. In the app, patients will answer questions about side effects and then receive personal feedback using a colour code.

If the answers show that the patient is fully autonomous, they will see a green light, together with some recommendations on how to maintain their autonomy. If a side effect is giving the patient more trouble, but they are still autonomous, the light will turn orange. Patients will then receive guidelines for taking medication, such as “you can take up to 8 Imodium tablets per day” in case of increased diarrhoea. If a side effect becomes too severe, the light will turn red. Patients then know to contact us, or the system will send us an automatic notification, depending on the situation.

JMGR is therefore a tool that supports patients in their decision-making.

By the way, we not only measure physical side effects but also quality of life. A particular side effect may not be medically alarming but can significantly affect a person’s social life. In that case, it becomes an emergency for us too.

Do you use the app in other ways to strengthen patients’ health literacy?

Absolutely.

Before starting treatment, patients receive a lot of new information, all of which they cannot possibly remember. After the consultation, we us JMGR to ask the patients questions and make sure that they have correctly understood the essence of what they have been told. If they did not grasp everything, we will not start therapy and will first provide the patient with additional information.

Before starting treatment, patients receive a lot of new information, all of which they cannot possibly remember.

Another example is setting smart goals: patients can use the app to set long-term goals, for example quitting smoking or starting to exercise. The app will help patients assess whether those goals are realistic and monitor whether they are making any progress. This helps us provide patients with more insights and it strengthens their autonomy.

A holistic approach to the patient is the cornerstone of your communication about JMGR. What does this approach mean for you?

For starters, we developed the app in a holistic manner in close co-operation with the Foundation Against Cancer (which provided the financial support for the project), the UCL’s Faculty of Public Health, patient associations, hospital patients, and the various healthcare providers in the hospital.

All information that patients receive via the app is also holistic, which means that it has been validated by all healthcare providers involved, from specialists and nurses to dieticians and psychologists. This helps us make sure we always keep the bigger picture in mind.

A second version of the app was launched recently: JMGR 2.0. What has changed compared to the first version?

Based on the patient feedback we collected from JMGR 1.0, we developed several new features, the most important one being the fatigue management feature. Patient feedback shows that fatigue has a very negative impact on patients’ quality of life. That is why we have developed a separate module that gives patients a better insight into the causes of their fatigue and offers solutions to better manage their fatigue.

Other new features in the app include providing additional information on topics about which patients often have questions, such as sex, physical activity, etc.

What other ambitions do you have for JMGR? And what would you like to see in the future?

We will continue to develop the application together with the hospital to best meet the needs and expectations of cancer patients receiving oral therapy. This is an ongoing exercise, as patients’ needs and expectations also change over time.

Any other hopes or dreams? I hope that a framework will be created for solutions such as JMGR, which can be used to further improve the efficiency of cancer care in Belgium.

An app like JMGR would be perfect for collecting Patient-Reported Experience Measures (PREMs).

An app like ours would be perfect for collecting Patient-Reported Experience Measures (PREMs). This is a buzzword in healthcare today, but very little actual data is available. And without traceability, it is very difficult to improve the patient’s care experience in a specific manner. Nursing specialists who will be starting work in 2025 could be a gamechanger thanks to their scientific mission.