QPATH4MS: The digitization of the multiple sclerosis care pathway

"Breakthrough treatment and diagnostic innovations in recent years have facilitated targeted, optimized treatment regimens for multiple sclerosis that are easy to understand and implement by patients and play a key role in the long-term success of modern treatment," says Tjalf Ziemssen, Professor of Clinical Neuroscience at the University Hospital Carl Gustav Carus as part of the Technical University (TU) Dresden. However, he adds that there is presently no service that informs and updates patients about the treatment plan, keeps track of medications, and documents the clinical progression. The research project now aims to change that.

The central instrument for implementing the QPATH4MS project is the so-called patient pathway. "Pathways refer to a standardized course of treatment that enables the physician and patient to create and digitally track a treatment plan," explains Dr. Hannes Schlieter from the Dresden University of Technology (TU Dresden). "The pathways are linked to specific quality indicators that – similar to an index key figure – deliver objective statements on the quality of treatment, but also track the perceived quality of care." This enables both patient and physician to monitor the quality of treatment. The concept also fosters a better understanding of the disease and subsequently promotes a more successful outcome.

Schlieter also points out that this marks the first time "patients are actively given quality information, thus promoting an informed decision-making process".

One thing is certain: "Patients want digitization," says Professor Werner Esswein, Chair of Information Systems, esp. Systems Development at TU Dresden. "They are familiar with the benefits of digital helpers. Examples include the discussion of concerns via video consultations or tracking appointments via patient portals."

This becomes obvious if you ask patients who are involved in the project. As experts of their own lives, they want to be heard and play a part in the portal’s development. For many, digitization already permeates nearly all areas of their life with MS. "This includes the electronic submission of a doctor’s sick note via an app, organizing and navigating travel, getting your news via apps or corresponding websites of providers, or purchase planning via an app," explains Kevin B. That’s also why he thinks this project is important as it closes the gap between MS and digitization.

The expectations of QPATH4MS are high: Lutz P. hopes for "technically accurate documentation concerning the course and treatment of the disease – including personal stats and data." This information could be helpful for both him and the treating physicians and therapists. Barbara G.* primarily hopes to see "reduced bureaucracy, a more active role for her in an effective diagnosis to subsequently optimize the coordination of care among physicians and avoid duplicate examinations, duplicate efforts, and added stress." She also aims to act as a coordinator between practitioners and therapists – utilizing her self-confidence.

Sabine H. also appreciates how this benefits her in daily life: "The portal would provide a better way for me to coordinate my private and professional appointments. Right now, I have two separate appointment books for this. The portal would be a central hub where I can manage and synchronize all my appointments. This would also give me one access point to all data pertaining to my health. Graphical data analysis allows me to quickly track my disease progression." When combined with the availability of relevant data for physicians and other persons involved, the portal becomes a joint communications system that assists all parties.

Karla W. also adds that when the disease causes things not to go so well, she has easy access to information or can ask for help via this digital resource. "This approach to connecting with others makes me feel more secure." It also enables people to run errands without leaving the house. A great advantage, especially amid the ongoing coronavirus pandemic.

The chance to be autonomous and self-determined – interacting with government authorities or health professionals, for example – is a way to help lower patient stress levels. Stefanie B.* attests that she often feels anxious when she has to obtain information. "In my case, this can drastically reduce attacks (episodes) of symptoms. If I know I have a reliable tool to help me, I feel more relaxed, which, in turn, improves my quality of life."

Many patients also appreciate that the QPATH4MS portal offers a way for them to connect with others who share similar life experiences. "This gives me access to a comprehensive network that shows me that I am not alone in this, which is something I occasionally need," says Kevin B. "Digitization can make me feel more secure and gives me an overview of the big picture. It also makes me think that I control where my path will lead with MS, and that it isn’t MS that dictates the path for me."

A structured overview, interconnectedness, communication options, autonomy, and self-determination – a rough summary of what patients expect from the QPATH4MS project. Project participant Sabine H. speaks for everyone when she says, "MS is a part of my life. I can only live the life I want to lead if I feel fine. I think that a digital transformation of processes between physician and patient can help me become the quality manager of my illness since it enables me to get the information I need at a glance and allows me to coordinate my schedule effectively."

* = Editor’s note: Names have been changed to protect the privacy of individuals.