The ethical guidelines laid out in the Hippocratic Oath nearly 2,500 years ago are about to collide with 21st-century artificial intelligence. The American Medical Association warns that healthcare AI must safeguard the privacy and security of patient information, as a commitment to doctor-patient confidentiality has been a cornerstone of medicine since Hippocrates. While we are excited by the value we see in emerging and proposed patient platforms, we must ensure that technology providers and decision-makers are building an ethical, inclusive, integrated and patient-first model. Facing such a revolution, one question remains nevertheless critical to empower humans: what are the needs to turn our “health consent” into a commoditised service which is valuable to us and our peers?
We envision the need to move toward a universal healthcare system. This model should consider human diversity and the value of personal data in both medical knowledge creation and application, in order to recommend measures for a healthy lifestyle and deliver the most efficient treatment. This naturally leads us to consider newer platforms and services, which will help us in the near future to have full control over our own health data, and a civic mandate to manage it properly and responsibly.
“Consent as a service” is a must-have to preserve our autonomy at the age of AI
Consent is what philosophers call a normative power. This ability is one part of autonomy: by giving consent, we are able to control our moral relationship with other people. Giving consent requires three main components:
- We need to be capable: we have to understand the information given about our health data usage. It is essential to use this information to make an informed decision. In cases of incapacity (accidents, ageing population, etc.) blockchain technology can help stamp some of our data usage decisions and seamlessly help in case of emergency treatments.
- We need to be informed and be given all the information about any treatment or use of our data, including benefit, risks, profit, and collaterals. However, informing people on such un-framed consequences is a huge challenge considering we, as humans suffer from our own biases and a huge availability heuristic when it comes to our health data management.
- We need to be willing to give consent and must not be influenced by pressure from any medical staff, friends, insurance, family, or any healthcare third parties. Achieving this willingness through easy, efficient and impactful action will intrinsically require specific patient empowerment services.
Blockchain to dispel people’s fear of health-data sharing
As data privacy is fundamental to health data, we believe that new technologies such as blockchain and AI could be used to ensure informed consent of the patient and allow them to control the access to their medical information. For instance, in France, within the scope of a clinical trial, the organiser must always conduct a pre-trial interview and obtain informed consent from participants to use their personal data. Pseudonymisation of patient data, private or permissioned blockchain and recording sensitive data off-chain are solutions enabled by new technologies which are currently being considered.
As a blockchain can already solve some of the aforementioned pain points and redistribute the power of managing health data to citizens, we believe in the importance of them being well-informed. Any citizen should be able to fully own the power of their DNA, genome and health and wellness data.
As reported by Microsoft in one of their last health reports, Nicolas Bedlington from the European Patient Forum, EPF states that “patients are generally willing to share their data to advance research in their disease area. But they are never cavalier. The holy grail is data security data quality and data compliance. This is why EPF is driving a new “Data Saves Lives” initiative at European level to raise awareness about the issues linked to data that really matter to patients”. There is more work to be done to increase the voice of the patient in healthcare design, and the patient community is willing to engage.
We also believe in the urgent need to continuously empower citizens in consent sharing actions. In that regard, how might we leverage AI and machine learning to identify the best moments and actions to convince more citizens to contribute to healthcare enhancement by giving their consent? The Health-EU initiative leverages AI to provide all citizens with a human avatar, and integrates behaviour sciences and is capable of truly delivering on the promises of personalised, preventive and participatory medicine. This may help enable such self-efficacy: who better than you to convince you this is the moment to share your data? This is a very good example of the use of AI to foster consent as a service commoditisation.
Finally, implementing the right legal framework is essential and will allow people to continuously review any decision made on any data sharing. Empowered with advanced available services and platforms, more and more of which are decentralised and supported by government initiatives, we may finally consider that we all need to control our “right to be forgotten”. Such a human right is critical if we want to preserve human autonomy, very often highlighted as a key pillar of ethical frameworks on AI governance. And this human right will need to be better considered as we move forward into a time when our data will be accessible to everyone, everywhere, all the time.
Pierre Robinet – OGILVY CONSULTING