My digital twin
Doctors and researchers from Erasmus MC, TU Delft and Erasmus University Rotterdam are working on a digital lifecycle care platform. ‘Healthcare is changing from reactive to proactive and preventive.’
When Régine Steegers-Theunissen, professor of Periconception Epidemiology at the Department of Obstetrics and Gynecology, and subdepartment of Neonatology at Erasmus MC, talks about the Digital Twin Project, she starts by introducing a character: a woman of 26, living in a problematic neighborhood in Rotterdam. The woman uses folic acid, her husband smokes. Steegers-Theunissen follows with a shocking statement: ‘The chance that this woman will have a healthy child is 33 percent’. Although the character is fictitious, the message is anything but that: many people have an increased risk of having a child with limited health because of living and working conditions, an unhealthy diet, stress, smoking, alcohol, or medicine.
Steegers-Theunissen: “All parents want their child to be born healthy, grow up healthy and have the best opportunities in life. But if you start from an unhealthy situation, it is not a given that those wishes will come true. Steegers-Theunissen and her research group have been focusing on the periconception period, from the first months of pregnancy to the first stage of the child’s life, for thirty-five years. ‘We study the effect of different factors on the reproduction and health of the parents and their child, and ultimately on the health of the generations that follow. Nutrition and lifestyle are essential factors for health. It is precisely in these areas that much can be gained, but within healthcare these factors are not sufficiently considered. Nutrition and lifestyle have always been regarded as factors from a grey area: what is the scientific evidence? It is not common to go to a doctor for lifestyle information, because he or she does not really know much about it. That has long been the position.’
Steegers brings the knowledge she gains from her research directly to young couples who want to have children. In 2007 she started the Healthy Pregnancy consultation to give couples information and personal advice about nutrition, alcohol and smoking at the clinic.
In 2003, she began to develop digital support: how do we ensure that a woman and her partner adopt healthy lifestyle habits? In 2011, www.SlimmerZwanger.nl was launched for exactly this purpose. For six months, couples receive tailored advice before and during pregnancy, and there is interaction about the most important dietary and lifestyle habits via digital supportive coaching.
We have shown in numerous studies that our approach is successful,’ says Steegers-Theunissen. ‘People who have gone through the program improve their nutrition and lifestyle. We also see that this healthier lifestyle is reflected in an increased chance of pregnancy, even in couples who are in an ivf trajectory. As a logical sequel, www.SlimmerEtenWithYourChild was launched in 2014. That program starts immediately after childbirth and lasts twelve months.’
Lifestyle care pathways
‘We realized that you actually need lifestyle care all your life,’ says Steegers-Theunissen. ‘For the beginning of life, we now have two programs (Slimmer Zwanger and Slimmer eten met je kind). With a Koers18 subsidy, two recent programs have already been developed for later in life: Slimmer Gezond in diabetes and Slimmer Gezond in cardiovascular disease. In early 2020, these two were launched and brought together on the website Mijnleefstijlzorg.nl and linked to the Erasmus MC patient portal. The next step is to use a Koers 23 subsidy to link these programs and create a patient journey for the entire life cycle. In that way we can offer digital lifestyle care paths, integrated with the medical care of Erasmus MC, but also with first- and second-line care, on a digital lifecycle care platform.’
This vision is the impetus for an ambitious new project as part of the Convergence of Erasmus MC, TU Delft and Erasmus University Rotterdam: My Digital Twin.
My Digital Twin
Steegers-Theunissen: ‘We want to collect large amounts of data, generate knowledge from that, and use that knowledge to develop products that improve healthcare. These products are intended for healthcare providers, the colleagues around them, and patients and their immediate surroundings.
The My Digital Twin data is stored following all safety and privacy conditions. For example, information with regard to lifestyle and environmental factors, reports of visits to doctors and midwives, laboratory results, results of MRI or CT examinations and data from studies in which one can take part. These data form, as it were, the hardware of the participant’s ‘digital twin’. Through the personal joint lifestyle and medical care path on the digital Life Course care platform, the software of the ‘digital twin’, the participant receives very targeted advice, monitoring and coaching with which they can improve their health, both in the hospital and at home. Doctors have direct insight into both the medical health status and context of their patient. Researchers can use the extensive anonymized data that is continuously supplemented to study diseases within a large patient population and to better predict, treat and even prevent future disease risks using artificial intelligence.
Steegers-Theunissen: “The development of the first prototype of My Digital Twin is aimed at patients with cardiovascular diseases. The symptoms of cardiovascular disease can be noticeable in the very early stages of life. If a pregnant mother suffers from such a condition, it puts her at increased risk of fertility disorders, miscarriage or premature birth, and poor growth of the child. In addition, pregnancy itself is a stressor for the woman: if she has a predisposition for cardiovascular disease, it may reveal itself earlier because of the pregnancy. Nutrition and lifestyle are of course important for everyone, but they are certainly important factors in the development but also prevention of cardiovascular disease, including in relation to pregnancy.
It is a challenge to bring all this data together and make it accessible to doctors, researchers and patients,’ says Richard Goossens, an expert in the field where users and technology meet. Together with Steegers-Theunissen, the Professor of Physical Ergonomics at the Industrial Design Department at the TU Delft is spearheading the project: ‘The diversity of users of the My Digital Twin platform is great. Some people are very handy with their computer or cell phone, others have more trouble with it. The latter group often includes vulnerable people and the elderly, who form an important source of information for this research. The platform therefore requires a sophisticated design. In addition, we must consider ‘the human factor’. It’s not just about collecting data; we must also remember that we are dealing with actual people. Goossens gives an example: ‘Suppose we would like to change a certain lifestyle because that would reduce the risk of cardiovascular disease. You would have to deal with ethical aspects, because who are we to help people get rid of their – in our eyes not so wise – lifestyle?’
‘My Digital Twin is divided into four phases,’ Goossens explains. ‘We start by collecting the data. Is there data available from before pregnancy until the moment of death, or the very moment a cardiovascular disease manifests itself? We are interested in medical data, research data, lifestyle data, and social and ethical factors. Searching for these data is a daunting task. The second part of the project focuses on building the necessary infrastructure. This is followed by the design of the algorithms used to analyze the data. And finally, we need to bring the knowledge gained from those analyses to the benefit of patients and caregivers. Think sensors, digital questionnaires, and digital coaching programs. Eight postdocs were appointed for the My Digital Twin project for two years, always in pairs of two, one from TU Delft, one from Erasmus MC. An umbrella working group monitors the ethical and legal aspects.’
Steegers-Theunissen and Goossens emphasize the importance of the convergence of Erasmus MC, TU Delft and Erasmus University Rotterdam. ‘Thanks to the convergence of our expertise’s, we are able to change our healthcare from reactive to proactive and preventive.’
This article was originally published on Amazingerasmusmc.nl.