The most common mistake when discussing cancer is to consider it as a monolithic disease. Cancer is not a single illness, but hundreds, with symptoms that require cures that are tailored to every single patient.
Today, cancer continues to be one of the primary causes of mortality across the entire world. There were 18 million new cases and 9.5 million deaths in 2018. Even if the battle against cancer is ongoing, important progress in the latest years is a source of hope.
Screenings, early diagnoses, and therapies are the three main methods that exist for facing cancer, but unfortunately, they are often not enough. Patients are forced to undergo invasive yet necessary surgical operations.
Thanks to scientific and medical progress in early diagnosis and treatments available, over half of the cancer patients have a life expectancy of at least 5 years after the first diagnosis.
Some studies have shown that over the next 20 years there will be a 100% increase in the number of patients. Europe is no less at risk: every year, in fact, 3,9 million new European receive a positive diagnosis, of which about 1,6 million are working-age, at the peak of their life expectancy.
Patients of all ages are forced to find ways to adapt to the physical, emotional, and relational changes that evolve out of the illness and its treatments. In the best-case scenario, after acute phase treatments, they are able to return to their “normal” life and re-establish an emotional balance. Often, however, the illness and related treatments leave their mark: side-effects and symptoms manifest after months or years, impacting patients’ personal moods, intimacy, and lifestyle.
CyberEthics Lab.’s involvement in the project relates to the understanding which welfare policies could be adopted to favour on one side the return to the daily life of cancer survivors still undergoing treatment and, on the other, health care professionals’ capacity to assist these types of patients in the most efficient, effective, and safest way possible.
The PERSIST project’s main objective is to leverage the potential of Big Data in conducting an advanced analysis of health data flows, in order to ameliorate the quality of care for cancer survivors. Artificial Intelligence (AI) more holistically supports follow-up efforts with patients. Advanced processing and analytics technologies provide health care providers with a better understanding of social factors that could allow patients to more speedily return to a new “normal.”
The development of a Big Data ecosystem will help reach this ambitious objective. Doctors, software developers, social scientists, and patient associations will collaborate in an attempt to engineer an open and interconnected health system.
In this context, CyberEthics Lab. proposes an approach to ethical and social analyses that derive from complexity theory and revised philosophical models for evaluating technological sustainability in the context of health care. In our vision, administrative and economic efficiency are not the sole drivers of a health care system’s sustainability. Other key contributing factors are patients’ and health care professionals’ will and ability to enhance public health, offer effective, first-rate medical treatment, and guarantee overall high quality of life.
In order to ensure the quality of life, which is recognized as important universally, concrete intervention is necessary for the form of welfare policies that enable patients to maintain or achieve their wellbeing. In PERSIST, CyberEthics Lab. pursues both the general and the specific, the former being human rights, the latter being the rights of individuals. A specific case is a right to personal data protection.
As health care systems tend towards digital transformation, analyses of massive quantities of data become more commonplace. Therefore, the use of personal data becomes a fundamental aspect of the optimal functioning of said systems both during biomedical research and during post-operative care. CyberEthics Lab. in PERSIST is responsible for the monitoring and evaluating the impact of how patients’ personal data is processed, collected, transmitted, and shared in compliance with national and European regulations on data protection (GDPR).
The use of Big Data and AI introduces another level of ethics, that of care. In social inclusion practices, cancer survivors are considered vulnerable individuals who return to a full exercise of power after receiving care. Factors such as empathy, solidarity, self-esteem, respect for others, and the acknowledgement of patients’ moral instances are an integral part of the inclusion process itself. Caretaking is a fundamental ethical aspect of human life. By taking care of others, we take care of our own vulnerable humanity.
Hence, in a project such as PERSIST, CyberEthics Lab. analyses and evaluates how artificial intelligence can be employed for “care taking”, to favour “the blossoming” of human life in general and individuals’ ability specifically. All the while, technologies are not made out to be the main asset for health systems. The risk is they would deprive life of any intrinsic value by maximising efficiency in the pursuit of a solution to illnesses.
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 875406