Monetizing private data of patients … There has to be a better way !

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Koen Van den Brande CSO

I recently watched The Great Hack on Netflix …

It is the story of how Cambridge Analytica ‘weaponised’ Facebook data and probably changed the outcome of both the US presidential election and the EU referendum in the UK as well as manipulating who knows how many other democratic processes around the world.

I guess I had already been building up some reservations about ‘monetising patient data’ as the basis for a business case for KoDe Health. We were assuming that was the only way to fund building a technology framework for collecting large amounts of structured and unstructured data from PD (Parkinson’s Disease) patients or PwP (People with Parkinsons). Our aim was to then enable researchers to use machine learning to draw new conclusions about what causes the disease, how to track its progression more precisely and eventually to find a cure.

At the WPC event in Kyoto in June 2019, my presentation deck included a slide which acknowledged the growing unease among the public about trusting Alexa – key to the way that PLM (People Like Me) proposed that PwPs could control the recording and storing of data. I had hinted at possible ways at addressing these concerns suggested by the ODI and Tim Berners Lee, well-known for having been first to conceptualise the Internet itself…

There is little doubt that ‘monetising patient data’ is already happening …

Recently, Google announced its acquisition of FitBit for a serious sum. The analysts and commentators on this deal, were in little doubt that the personal health data of users will have been a factor, at least, in this valuation.

I was testing my thinking on this subject on a venture capitalist I was introduced to at a wedding and he said he doubted people really care about data privacy, citing another recent deal ….

It did not take me long to find the details of a ‘secret deal’ with Ascension …

https://www.theguardian.com/technology/2019/nov/12/google-medical-data-project-nightingale-secret-transfer-us-health-information

In the Kyoto deck, another slide made an attempt at defining a ‘Data Vault’ and a set of APIs to store and retrieve data securely.

An idea to put PLM users in charge of their own data and let them ‘monetise’ it themselves by for example choosing which researchers to grant access to and which causes to donate the proceeds to … was considered too controversial to be put on a slide at that stage. We agreed to discuss it informally first.

But the discussion has to start…

So we do now propose a patient-controlled personal data monetisation model.

Patient control over storage and retrieval, with full transparency regarding data users and binding agreements as to purpose.

Key to this model is that we offer patients a range of options for the revenues resulting from monetisation … from personal, over research studies, named charities to ongoing development of the KoDe Health framework and chosen partner Apps.

I have added this slide to the introductory deck.

Now, it seems to me the risk of taking charge of personal patient data is too large for Kode Health alone to handle … So we will have to rely on the industry to provide the ‘Secure Vault’ etc,

I had already started high-level conversations with a few members of my team about shifting to an ‘open source’ approach to achieve the transparency required and level the integration playing field.

In this area specifically, where transparency is one of the biggest concerns – keeping in mind the Cambridge Analytica saga – ‘open source’ would seem one way to make sure we can inspect a least the nature of the data and how it is processed …   

‘Open source’ is also a way to bring together expertise for a good cause, without having to consider ‘monetising patient data’ as the only way to fund the construction and maintenance of such a framework …

Now that Tim Berners Lee has launched his ‘Contract’ to try and protect his legacy from abuse and growing mistrust, without sacrificing its potential, we can start to design and build a PLM framework whilst assuming some of the regulations and infrastructure  – like the Secure Vault – to ensure data privacy, will arrive in due course.

The Contract tries to establish a broad consensus around basic principles – like an Internet ‘constitution’.

It talks about giving people control over their data…

https://contractfortheweb.org/principles/principle-5-respect-and-protect-peoples-privacy-and-personal-data-to-build-online-trust/

Minimising data collection … but what about areas – like health – where minimising data collection is not the priority – quite to the contrary … ?  And yet the risks of abuse of private health data are just as real and probably even more disconcerting than data on our purchasing priorities !

We are clearly at an early stage of this debate … The word ‘monetisation’ does not even feature, it seems.

However, clearly some level of funding remains a ‘sine qua non’, without which very little can be achieved anyway …

Which is why we have decided will be pitching for crowdfunding the cost of going from the specifications to a proof of concept so that we can commit ourselves to ‘open source’ transparency and the ‘Contract’ principles.

And so KoDe Health has decided to change direction … away from the concept of ‘monetising patient data’ as a business model.

I think the venture capitalist I spoke to may just have underestimated how big an issue this really is …

We are now formulating our crowdfunding pitch …

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