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Who is responsible for informing patients when their data is being used to create secret intellectual property?

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Browsing: Who is responsible for informing patients when their data is being used to create secret intellectual property?


Adrian Gropper

Posts: 1
posted

As clinical decision support and machine learning technology become more powerful, funding of medical research is shifting away from the traditional government and charitable foundations toward global corporations eager to develop secret intellectual property they can sell patient-by-patient. $Billions are being invested in secret databases like Roche Flatiron Health http://thehealthcareblog.com/blog/2018/03/01/the-time-is-now-to-develop-and-implement-a-national-health-data-strategy/#comment-862969 De-identification as a way to avoid consent is being sought by Facebook as well as the hidden data brokers https://www.cnbc.com/2018/04/05/facebook-building-8-explored-data-sharing-agreement-with-hospitals.html and natiion-states such as Italy with IBM Watson and England with Google Deep Mind (see attached paper) are getting in on the new funding bandwagon.

The attached NHS / DeepMind paper makes particularly clear how this conflict of interest operates. The researchers, clinical institution, and the corporate sponsors are fully aligned in wanting to keep these deals out of the public eye and to avoid questions of how future patients and society will pay for these "private islands of innovation".

Who is responsible for informing patients when their data is being used to create secret intellectual property?

Rubi Linares-Orozco

Posts: 31
posted

With the recent news surrounding Facebook and now this article on Deep Mind... all I can say is WOW!

In response to your question, as to "who" is responsible- I think the article makes it clear that it is not one person or one entity that can address this question. All parties involved bear the responsibility to ensure patient autonomy is respected.

"How" this is done is a seperate question.

While most of the article dealth with specific EU regulatory laws, the same lessons apply in the US. This conversation requires stakeholders and policy makers to inspect our exisiting policies, and make future policy decisions through the lens of future technological advances (easier said then done, many of our own governmental representatives do not understand how current technologies work). The other point the article made is that companies, and more specifically healthcare institutions bear a part of this responsibility to their patients, in which they need to be more diligent gate keepers, ask the difficult questions, ensure companies are equipped and knowledgeble to protect patient data, and provide transparency.

I beg to question, what would happen if every healthcare institution announced their data sharing agreements to the public? What would be the local response? I am assuming it would be the same Royal Free is experiencing- exodus of patients from healthcare systems. Business dealings without transparency will utilmately cause patient-physician relationships harm, which is the reason we have HIPAA laws- the very essence for protecting patients privacy.

In our complex healthcare system, everyone can make an impact, including educating patients as healthcare consumers.