The article titled
Ethical and Legal Aspects of Technology-Assisted Care in Neurodegenerative Disease by Dr. Bjoern Schmitz-Luhn and Jennifer Chandler on behalf of the iCare-PD consortium is an exploration of how technology is used and applied in the context of neurodegenerative diseases such as Parkinson’s Disease. It discusses the benefits of new technological developments when applied to the patient, but also the benefits it has on physicians who decide to implement these technologies. It addresses some of the challenges that new tracking technologies may face, such as the concept of informed consent, and how that can be addressed with a patient should the issue arise where a patient can no longer give continued informed consent. The technologies discussed in this article are vast. They all fall under the category of telehealth technologies in some form, and many concepts are referred to as eHealth and mHealth solutions, which are platforms commonly used to respond to the needs of managing complex chronic conditions. The goal of these technologies is to provide patients with the ability to assess and manage their symptoms, monitor the progression of their condition, support patient’s decision-making, and much more. The intent of flexible monitoring allows more comfort and control for the patient. The example given in the introductory paragraph is the use of sensors, which are used for monitoring physiological processes. The sensors are able to automatically detect changes in chronic conditions, and being able to indicate where therapeutic processes need to be adjusted. One of the major benefits mentioned in this article is the mutual benefits for both the physicians and the patients. E-Health and mHealth solutions provide the opportunity for patients to get health advice away from their physician’s office. Other benefits include letting patients independently track their symptoms and facilitating symptom testing that would previously only be performed in person. The goal of these systems is to allow the patient to live more independently and receive more consistent medical attention away from their physician’s office, which can- unfortunately- be very inaccessible when patients need it. It also allows the patient to spend more time in the care of loved ones, who are often a big aspect of a patient’s support base. Conversely, these technologies can benefit the medical professionals involved in the care of Parkinson’s Disease. The use of these technologies can be combined with larger databases (a concept that is explored later) which benefits the physician during the treatment and/or diagnosis phases of Parkinson’s Disease. The article addresses the issue of patient consent. Monitoring technologies can often be viewed as invasive, as health information is very personal to an individual. Personal data is collected through these technologies, alongside secondary evidence such as the social and environmental data of a patient. The article recalls some of the challenges that FitBit faced for its use of personal health data. However, the article reveals that consent to collect personal information is always considered in the development of these technologies. The issue of anonymity is considered, and it can be hard to guarantee. However, treatment and personal data collection almost always require patient consent regardless of whether it is conducted in person or online. No matter the case, the patient always has the ability to accept or reject treatment based on their information base. In the context of algorithmic suggestions which are based on the data collected from a patient, their fundamental right still stands. The collection of data in order to be able to form algorithmic suggestions is entirely up to the patient. A question is presented by the article: Should patients be included in deciding upon the algorithmic use in their own treatment? The answer has yet to be concluded. The concern of algorithmic suggestions is the assumption of human error based on user-provided content for this reason. It is expected that patients will occasionally make mistakes when recording their own information. A solution proposed by the article is to have conditions clarified when algorithm suggestions are recommended to the patient. Informed consent is always considered in the development of these technologies. The reality is that neurodegenerative diseases can progress to a point where a patient has issues with their memory throughout their day. A precaution implemented in the use of mHealth and eHealth solutions is the secondary patient sensors. As previously mentioned, these technologies have environment sensors. These sensors are integrated into everyday life and surrounding objects to better accommodate patients. These can benefit in the event that a patient is unable to give informed consent and bring attention to caregivers when they are in this state. It is also noted that personal sensors worn on the body always have the ability to be turned off or removed from the body. The collection of data with these technologies can be beneficial to physicians, as mentioned earlier. The simpler databases that are made up of user-provided content can be combined into larger medical databases to improve understanding of chronic neurological diseases. More information being accessible to physicians is beneficial, as it can reduce the time it takes to diagnose and develop care plans for patients. Another benefit of these databases is the fact they are made up of user-provided content, and therefore allow patients to receive everyday suggestions and care away from their physicians. This allows more time for the physician to focus on individual consultations with the patient. Additionally, it relieves patient congestion for physicians. It allows more patients to be seen for more involved appointments. In terms of medical advancements, combining databases allows for more observed knowledge about risk factors associated with disease progression or any possible comorbidities. The technologies mentioned in this article are constantly developing. The article states how promising the research and development are for a patient’s quality of life. The ethical concerns addressed in this article have a proposed solution: they can be worked out by adapting new technologies to the ethical standards of other existing tech. Overall, the article explores a lot of the ideas surrounding the new developments of some of the iCare-PD technology that proves to be beneficial for all aspects of neurodegenerative disease patients. As iCare-PD develops more technology relating to addressing the complex care of Parkinson’s Disease and other such illnesses, more exploration will be done in order to properly inform patients and the public about the progress of different technologies. Siobhan Rollo — Student in Digital Journalism at the University of Ottawa
Schmitz-Luhn, B., Chandler, J. (2022). Ethical and Legal Aspects of Technology-Assisted Care in Neurodegenerative Disease.
Journal of Personalized Medicine, 12(6): 1011. https://doi.org/10.3390/jpm12061011