"I now know what really matters in life"

Interview with Rainer, a CAD-patient and participant in the TIMELY-project

Around 49 million people in the EU suffer from cardiovascular diseases. Here, Coronary Artery Disease (CAD) accounts for the major share of the diseases. In this context, narrowing of vessels by atherosclerotic processes is closely linked to an unhealthy lifestyle. This was also the case for the North Rhine-Westphalian deacon Rainer. After successful stent placement and a bypass surgery in 2021, the 58-year-old is again living life to the full and is one of the first patients to take part in the EU-funded TIMELY project, which aims to improve the range of therapies for CAD patients.

When Rainer speaks to us on a sunny Tuesday morning in February, we see a 58-year-old deacon who is young at heart and beaming into the camera. His eyes light up as he speaks from his office in Bergisch Gladbach about his fulfilling work in the congregation of Bensberg. You can also sense his enthusiasm through the screen when he talks about his family and the two grandchildren. Only when he begins to talk about his "heart stories" – as he calls them – does he become more thoughtful, and concern taints his voice.

At the age of 30, he suffered from health problems for the first time. "Up to that point, my lifestyle wasn't exactly exemplary – I was 25 kilograms overweight, didn't exactly have a healthily diet, and didn't exercise enough," explains the 58-year-old. "When my general practitioner explained the consequences of my unhealthy lifestyle to me, it was a real incentive to exercise more and start jogging." Rainer managed to develop a new passion, and thereby also to temporarily control his high blood pressure without medication.

Sometime later, however, his cardiologist notices irregularities in the heart during an exercise EKG. A cardiac computed tomography provides clarity: A bypass is necessary to prevent the potential consequences of coronary artery disease – such as a heart attack, heart failure or arrhythmia. A new heart valve has to be placed too, as Rainer Beerhenke suffers from a previously undetected congenital heart valve defect. Although Rainer recovers well from the medical procedure, the odyssey is not over for the deacon: A 24-hour ECG reveals a brief tachycardia. Shortly thereafter, he receives a stent at the Porz Heart Center. This procedure, too, is successful for Rainer. During the subsequent rehabilitation period, he feels well cared for by the physicians and therapists at the Königsfeld Clinic in Ennepetal. He decides to participate in the TIMELY project, in which Dr. Boris Schmitz is also involved. Why did he decide to join? "It was a win-win situation: I benefit from the more intensive care during the rehabilitation phase and at the same time contribute to the fact that other patients with coronary artery disease also benefit from the scientific findings," says Rainer Beerhenke, summarizing his motives.

TIMELY intends to provide CAD patients with close and individual care, also after their rehabilitation stay

"We see many patients with coronary artery disease like Rainer. One of the biggest challenges for many of them is making lasting lifestyle changes – towards a healthier diet, management of stress, and more physical activity and sports. After rehabilitation, many fall back into their old, unhealthy habits and complain that they don't feel they are being adequately supported," comments the principal investigator of TIMELY, Dr. Boris Schmitz. "With the TIMELY research project, we intend to develop digital solutions that enable individual care for our CAD patients beyond medical rehabilitation to avoid long-term complications."

TIMELY takes a holistic approach to providing the best possible support for patients in self-management to cope with the disease and prevent the progression of CAD. The focus is on a digital platform, which can be accessed by all participants. It collects readings from external devices and stores databases with reference values and guidelines. The aim is to use artificial intelligence (AI) to provide every patient with individually tailored therapy support in the future. The central link between the patient and his or her physicians and therapists is the Case Manager, who is assisted in patient management by means of a decision support system and can thus access AI-supported risk assessments and intervention measures.

The TIMELY platform with all its functionalities will be developed over the course of the project, which is scheduled to last almost four years – in particular, user suitability and operability will be assessed together with patients. Rainer Beerhenke is taking part in the first pilot phase of the TIMELY project. He is fitted with a blood pressure monitor, an activity tracker and an EKG patch for six months after his rehabilitation stay. The systems are currently in the test phase to determine application and user acceptance. The aim is to be able to transfer the readings promptly and process them centrally. "The digital measuring devices (blood pressure and activity trackers) are very helpful, and I think the ECG patch is brilliant, without all the cables that are otherwise necessary. The daily measurement of my blood pressure has sensitized me to listen more closely to my body." He also appreciates the close care provided by the study team, as this provides a way for patients to be informed in the case of a serious event and, if necessary, ordered to the hospital. For Rainer Beerhenke, this is also an emotional safeguard, for he had never noticed his heart problems in the past. "What stays at the back of my mind is the worry that even in an emergency, I wouldn't notice anything and so wouldn't be able to notify the rescue services in time." And Dr. Schmitz adds: "With the TIMELY platform, we intend to develop a tool that enables patients to confidently and actively shape their health. In addition, patients receive individual training plans and recommendations. Notifications about unfavorable developments and recommendations for intervention will also be possible. Overall, we will thus create a sense of safety."

Digital therapy solutions offer advantages to patients

In general, Rainer is open to e-health solutions. He is using a smartwatch for his running training and an app for autogenic training offered by his health insurance company. He also welcomes electronic visits, which save patients time. He is hoping that the TIMELY platform will provide patient-tailored content and individual rehabilitation plans, as well as tips and recommendations if the transmitted health data changes spontaneously. Rainer sees many advantages of a digital platform, especially for CAD patients who have to watch their diet or get a grip on their alcohol and tobacco consumption. "However, one should not become dependent on digital tracking devices, but rather develop a sense of listening to ones' body," he adds.

On the right track

"In general, I now feel good again, and it feels great to be able to go jogging outside again," says Rainer nine months after the rehabilitation stay. During the rehabilitation phase, however, he also noticed that the rehabilitation process consists of two levels for him: "On a purely physical level, I quickly regained my fitness. The recommendation to do sports was not a challenge either. Unlike many other CAD patients, I was used to exercise. However, I quickly realized that processing the events mentally would take time. Things happened so quickly, and I have to digest them first." A therapist is helping him process the events, and of course his family is close by his side. "My heart disease changed me. I know what really matters in life: family and friends. Nowadays, I no longer take everything so seriously, and I can make decisions more consistently and stand by them." For the future, he would like to see more information about coronary artery disease and awareness regarding genetic predisposition.