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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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Adrian Gropper

Posts: 2

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 De-identification as a way to avoid consent is being sought by Facebook as well as the hidden data brokers 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: 34

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.

Sara Meeder

Posts: 27
posted in reply to rubi linares-orozco

Here here, Rubi! I do wonder though if people would leave valued services en masse now upon being educated about data partnerships. I suppose a lot would actually depend on the data being shared, the transparency of the sharing, and who the data was shared with. New York Academy of Science and NYU Langone hosted a conference on healthcare in the era of big data last week, and it was really encouraging to see the differences in how people were talking about big data and patients as compared to last year's conference. Pretty much every session (except one--such scandal!) spent a lot of time focusing on responsibility to the people whose data is being collected. The session on 3rd party data sharing is well worth checking out.

Adrian Gropper

Posts: 1

There's a direct relationship between how personal data is shared today and the cost of healthcare tomorrow. Almost every article in this issue is about this topic. Is it the responsibility of clinicians and researchers to explain this to our patients when we seek consent?

Camille Nebeker

Posts: 55
posted in reply to adrian gropper

Adrian, Thanks for sending the link ... looking forward to reading it. I do think it's the responsibility of researchers to inform participants and clinicians to inform their patients but, how to do that is challenging. It requires addressing data literacy and technology literacy which requires time. Informed consent will need to change considerably to actually result in an informed participant. We are beginning to work on this but need to identify a funding source that is interested in addressing these issues. Let me know if you have ideas.


Adrian Gropper

Posts: 2

Camille, Thank you for acknowledging the issue.

It seems unlikely that funding to educate and inform patients will come from the device and pharmaceutical vendors, the hospitals, the medical schools, or even the physician organizations. Each of these groups benefits directly from funding by private interests that seek profit from the sale of AI and decision support based on secret intellectual property. Even the charitable funders of clinical research that I've talked to are reluctant to fund this kind of work because they are judged on the basis of research results rather than the long-term cost-effectiveness of caring for everyone.

Funding for this kind of work will probably need to come from groups that are on the paying-side of clinical medicine. That means patients facing out-of-pocket expenses and bankruptcy or governments committed to universal coverage for all of their citizens. What groups would organize patients and solicit the political branch to consider the long-term impact of turning personal data today into secret medicine tomorrow? Even if such a group arose, how would they stand the criticism that reducing the profit motive around secret IP would delay the discovery of new treatments?

A legal scholar recently posted a great update on the issues related to Facebook, Google, and other personal data brokers This problem is not restricted to clinical medicine but goes all the way to the core of civil society's institutions.

The most realistic approach would ask the professionals that are doing the research and persoanlly benefitting from the personal data of patients to set-aside some fraction of their time and money to organize around this issue. Them is us!