When Data is the new frontiere for Human Rights | Haider Alleg

Hu-manity.co Interview on Data Donation and Digital Twins with Richie Etwaru

As eyeforpharma 2019 is ending, I had the privilege to share my thoughts with the team at Hu-manity.co and with their CEO Richie Etwaru. I was impressed with the teamwork but mostly how they positioned their offering in the very turmoiled world of data privacy.

My immediate thoughts were linked to the concept of Dataw Donation.

Data Donation is the idea that tomorrow or even today, people will be willing to give their data as much as they would do with organs. That valuable asset could save lives but could also be monetised. If we all do it, societies have even more ways to anticipate with extensive data programs and predictive models to predict phenomena that could change our lives.

The second idea connected to the donation of data points is building digital twins. By aggregating data in a structured manner, you will make a vision in silico of your past, current and perhaps future behaviours.

You see me coming. This is where the notion of putting the data set of each individual in a virtual bank is critical. This is what I understood Hu-manity.co is aiming to be. A digital wallet that is trusted enough to protect your privacy and act as a proxy to your organisation would have granted access.

It is also well aligned with the notion of having data privacy by design. At Ferring, I am not advocating collecting data we don’t plan to use because it is wrong and stored, and old information is as good as dead.

Having a partner that takes the accountability to collect the trust and engage its credibility in managing the whole flux of data is something beyond what most healthcare companies can do.

It is tempting to go and build a tech arm running a data-driven business, but if you select that road as a company, you must be prepared to evolve your business models along the line. Managing patients’ or consumers’ data donated and monetising for them that portfolio of assets is something, not all companies are culturally ready to disrupt themselves toward.

I genuinely welcome startups that decide to start and test their models in healthcare. What the team here is doing is walking on eggs and requires excellent leadership and vision. Kudos to the team for taking it that far. That is definitely on my list of startups to monitor in the following years that will significantly impact how people will deal with data, their digital twins and helping others by donating their records.

For more information, check my interview and quote here and feel free to look at hu-manity.co website.

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