Chronic and complex diseases in children are often a heavy burden on their families. Parents naturally want their children to have the latest treatment, and children are usually treated by several specialists. This makes it rather difficult, or, at the very least, involves considerable effort to keep everyone up to date. Dr. Joachim Riethmüller from the University Children’s Hospital in Tübingen and his team of doctors are using telemedicine in an effort to improve treatment and care of children.
We live in a digital world. In 2014, almost one in two Germans over 14 years of age owned a smartphone and used it to send emails, chat and of course make phone calls. This digital trend is not yet apparent in the field of medical communication. One of the main obstacles is data security and protection. "You cannot just mail your patients a PDF file with medical findings; this is forbidden for reasons of data security and protection," says PD Dr. Joachim Riethmüller, Director of the Cystic Fibrosis (CF) Outpatient Department and Director of the Paediatric Clinical Study Centre at the University Children's Hospital in Tübingen.
At present, information is exchanged between doctors and patients or the patients' legal guardians or between two or more doctors either when the patients come to see their doctor, on the phone, or by mail or fax. This is a time-consuming process for all parties and does not always have the desired effect as doctors are difficult to reach by phone during their hectic working day. "We want to make communication with patients and those who look after them in the local hospitals secure and, in particular, more pleasant," says Riethmüller. Tübingen University Children's Hospital has therefore launched SMARTY, a project that provides doctors, patients and families with access to a social medical application platform (SMAP) that communicates data in a timely and secure way.
SMAP gives users a secure platform on which it is possible to exchange sensitive information about treatment and other issues through end-to-end encryption (E2EE). The platform was developed by a company called careon GmbH from Tübingen, and the University Children's Hospital has the use of the platform during the project period of three years. "As part of the project, careon GmbH also operates the clinical interfaces, which means that we have a direct link to the platform through our internal software packages in order to enter patient findings directly into it," explains Riethmüller. "The idea behind the project is that it will be easier for doctors to communicate information with their patients, and also easier for patients because they will also use the platform to communicate with their doctors and do not need to call, write a letter or send an email," says Riethmüller.
The project involves three groups of chronically ill patients: children with cystic fibrosis (PD Dr. Joachim Riethmüller), children with tracheostomy on permanent ventilation (Dr. Matthias Kumpf) and children with chronic liver and bowel diseases and transplants (Dr. Ekkehard Sturm). The project involves the three clinical partners alongside careon GmbH, the Health Services Research Coordination Office at the Medical Faculty and the Institute of Occupational and Social Medicine at Tübingen University Hospital. It is funded by the Baden-Württemberg Ministry of Science, Research and the Arts and the Baden-Württemberg Ministry of Labour and Social Affairs, Family, Women and Senior Citizens as part of the "Application-oriented Telemedicine Transfer Research" programme.
SMAP offers so-called digital rooms in which patient-doctor conversations can take place at different times. Not all participants need to be online at the same time. Other people can be invited into the digital treatment room, including parents or other treating doctors. "I am very positive about the project because all three project participants are working on ways to make the secure transfer of data possible so that we can communicate without other people listening. We also hope that SMAP will make it easier for our patients to communicate with us and enable several doctors to exchange information and discuss patient data. Of course, we will only do this with patient consent," says Riethmüller. This type of communication between doctors and patients is part of a participatory decision-making process, which means that decisions on treatment are made jointly by doctors and patients. The goal is to increase the medical competence of patients, which is one of Germany's national health objectives.
Over the next few months, the project partners will conduct a feasibility study involving patients, their relatives and doctors. The treating doctors – PD Dr. Riethmüller, Dr. Sturm and Dr. Kump – will scientifically evaluate the information provided. The first phase of the project will be the development of questionnaires to collect information for use in the scientific part of the project. The following five issues will be investigated: 1) Is the platform used at all? Why do doctors and patients use or not use the platform? 2) What attitudes and expectations do the various participant groups have? 3) Can the health competence of children, adolescents and their parents be improved when they use the platform? 4) Can the perceived quality of treatment and care be improved? 5) Could the time previously required to deal with all issues related to the treatment of the children be reduced?
The researchers will use the questionnaires to evaluate the pros and cons of the SMARTY platform for use in the treatment of chronically ill patients. At the beginning of the study, participants had to provide information about their expectations. The project is still in the preliminary phase as the study protocol needs to be developed, the questionnaires prepared and privacy policies and patient information dealt with. A comprehensive data protection concept has also been developed. "I sincerely believe that this type of communication will happen at some stage in the future; it is just a matter of time. What we need to decide is whether we think it is something we should use for communicating with and treating chronically ill patients," concluded Riethmüller.