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Ethical, Legal, and Social Considerations for the PREPARE Project

The PREPARE project is on a mission to revolutionise rehabilitation care for patients dealing with chronic non-communicable diseases. It will develop innovative and personalised tools to support healthcare professionals and patients in deciding treatment options. While this project holds the promise of transforming healthcare, it’s important to consider the ethical, legal, and social implications that come with such innovation. In this article, we will break down these issues and explain why they matter.


Ethical Concerns

Data subjects have the right to know who processes their data and for what purposes and should have control over their own data.

GDPR

Privacy and data protection: With the use of big data and AI, there’s a concern about how patient data is handled. Health information is sensitive, and it is crucial that this is kept private and secure. PREPARE needs to ensure that your data won’t fall into the wrong hands.

Data usage and informed consent: The heart of the PREPARE project lies in the collection and analysis of health data. Whenever your data is used for research, you have the right to know and give your consent. Ethical concerns arise if this isn’t done properly. PREPARE must be transparent about data usage and get proper consent from patients.

Bias in AI: AI algorithms can sometimes be biased, leading to unfair treatment of certain groups. It’s essential that PREPARE’s AI models are trained on diverse data to avoid perpetuating existing biases in healthcare.

Legal Issues

Innovation must go hand in hand with respect for the law. Legal compliance is not a constraint but a commitment to fairness and accountability in the digital age.

Executive Vice President of the European Commission for A Europe Fit for the Digital Age

Data ownership: Who owns your health data? This can be a complex legal question. When participating in PREPARE, patients need to understand their rights regarding the data they contribute. The PREPARE project needs to address these issues to ensure that your rights regarding your data are respected.

Regulatory compliance: Healthcare is a highly regulated field and PREPARE must navigate these regulations to ensure that it complies with laws related to data privacy and medical research. This is essential to protect both patients and healthcare providers legally.

Liability: If the AI predictions or stratifications made by PREPARE lead to medical decisions that result in harm, who is liable? These legal questions need clear answers to protect both patients and healthcare providers

Social Considerations

Trust in healthcare innovations is built through transparency, accountability, and a commitment to ensuring that no one is left behind in accessing the benefits of progress.

Gagon et al. 2012

Healthcare access: While PREPARE aims to improve healthcare, there’s a concern that AI-driven healthcare might not be equally accessible to everyone. It’s vital to ensure that these advancements benefit all, regardless of their background or socioeconomic status. The project should aim to bridge healthcare disparities.

Job impact: Automation through AI may change the job landscape in healthcare. Some tasks currently done by humans might be replaced by machines, raising questions about job security for healthcare professionals. Transparency about these changes and efforts to provide training for healthcare professionals are vital to address potential job disruptions

Trust in Healthcare: Trust is at the heart of the patient-doctor relationship. As AI becomes more integrated into healthcare decision-making, ensuring patients trust the technology and healthcare providers using it is a significant social challenge. PREPARE’s success depends on patients trusting the technology and the healthcare providers using it.

Stakeholder involvement: The project emphasises a design-based approach, where technical and medical partners, and various end-users, are actively involved in shaping the technology. This is not just about functionality, but also ethics. Your feedback as a user can help ensure that the system aligns with your ethical values and expectations and is designed to be user-friendly.

The PREPARE project is undoubtedly exciting and holds the potential to transform healthcare for millions of people. However, it is important to address these ethical, legal, and social issues to ensure that these advancements are responsible, fair, and beneficial to everyone. As a patient or a member of the public, you have a stake in these issues. You can be engaged in advocating for ethical, legal, and socially responsible healthcare practices, to help ensure that these standards are upheld, and that healthcare remains accessible and trustworthy for all. In doing so, you will help shape the future of healthcare for the better.

Author: Lem Ngongalah, Trilateral Research