This week, Ilona Schelle and I visited a panel discussion in Brussel. Organized by APCO Worldwide for the European commission, there was a discussion on the topic ‘Artificial Intelligence (AI) and Healthcare’. Inspire2Live is about cancer and most of the discussion was on this part of healthcare. The keywords were: ‘Better diagnosis’, ‘Consumer rights’, ‘Privacy (in this area more important than in daily life, according to the panel)’, ‘Patients rights’ and (interesting) ‘Cultural change’.
A relevant question that we got was: ‘What kind of regulation do we need with AI in healthcare?’ When the answer comes from regulators, the answer is: ‘We need more and specific regulation for AI’. But we, patient advocates, simply say: ‘Please, no more regulation. Can we have a moratorium on regulation!’
There is enough regulation and with more we will definitely kill this chance for patients and take away their hope AI can be a chance for better diagnostics and treatments and therefore quality of life. Regulation kills innovation. We all know that. The checks and balances are already in place. We can exchange data because of General Data Protection Regulation (GDPR). I know the barriers, but we can exchange and use the data, we only have to ask the patients. Don’t be afraid to share it and no, your publication is not of greater importance than our lives, so hurry up.
Other checks and balances deal with the scientists. When they abuse our data, their career is down the drain. More or less the same counts for industry: They are out of business. No industry wants a second Cambridge Analytica and that wasn’t even about patient data. As we say: ‘Stop talking about the abuse of data. Use our data!’
It’s all about trust. We give our data when we have trust. We use the data (as scientists and industry) when we trust that we won’t get sewed. And trust has to do with the question whether the checks and balances are in place. When we ask ‘Do you trust banks?’, nobody says ‘Yes!’, but we all have our savings on a bank account. Because we trust the checks and balances. Therefore: we don’t need (more) regulations. We know that the checks and balances are in place. And we trust.
Ilona Schelle and Peter Kapitein
Patient Advocates Inspire2Live