By HAMISH MACDONALD 

Being a patient has always meant being at the bottom of a trickle-down pyramid in healthcare. Late to get information, our test results, our data, and as for earning the money that our healthcare data is worth – that is something the healthcare industry does without our permission or dues. We are left right out of that.

But what if we made clinical data tools available on your device, so that you could build the most valuable set of healthcare data that exists about you anywhere? What if you owned that particular data set as your personal asset? Well, we think that researchers are going to want access to it – and pay you for that access.

Not only that, how valuable would it be to have the most complete and accurate healthcare data set available about you under your ownership and control? How can you expect a doctor or yourself to reach the best conclusion with incomplete information about your health?!? Frustration, confusion, anxiety and poor health outcomes are often the result.

How The Sovereignty Network empowers you to build your own healthcare data set

Building the most valuable data set about you, for you, is what we have done at The Sovereignty Network. We elevate you as a patient to be a Data Owner. There are 4 easy steps to becoming a Data Owner and earning what your data is worth – and having a complete and accurate set of your healthcare data on hand for your peace of mind.

1. We have clinically coded simple to answer FHIR and SNOMED CT questionnaires that cover the entire spectrum of your health. We call it “DCPLEG”. By filling out questionnaires in your personally owned and secure profile that represent your Demographic, Clinical, Psychosocial, Lifestyle, Environmental and Genomic data you paint a complete 360 degree view of your health.

• Where Clinical data sets are also available, such as in the US via the newly implemented Patient API rule, you can also add your clinical data from your healthcare providers. The spread of the FHIR data interoperability standard around the world makes this increasingly feasible to accomplish.

• Data Researchers are able to sit at their desktop and specify the precise criteria that they are looking for (anonymized, of course) using the same clinical codes that you and others have already filled out in your health profile above. E.g. Age, sex, condition(s), medication(s), procedures, deeper demographic information, environmental, lifestyle, psychosocial markers, etc. Through partners even individual base pairs within a whole genome can be specified. Through the Sovereignty Network they can then make you an offer that you can’t refuse, as it were. If you agree to the offer, only then can they make contact with you with their survey they invite you to complete.

• We have invented a new class of work we call the “Data Coach” that works rather like the synaptic fluid between joints but here between the Data Researcher and you as the Data Owner. A Data Coach is a vetted healthcare professional / healthcare data expert who verifies on your behalf the specific criteria needed by the Data Researcher. If a Researcher is willing to pay you, say, $100 to fill out a 20-minute survey because you fit their desired set of criteria, you are probably willing to pay some fraction of that to qualified Data Coaches to verify the criteria. (And once verified, criteria likely don’t need to be verified for another Data Researcher).

Turning your data set into licensable income – or donating it to causes you support

Because you and only you own the copy of your healthcare data that you have built – your record, or specific parts of it, is now licensable.

Perhaps more licensable than we can imagine today, as until now so much potential healthcare research or Real World Evidence simply doesn’t take place because it is considered too difficult, time-consuming and expensive to directly perform or else hire research organizations to carry out research. This is something really exciting to consider, for you individually but also for the world of research.

You may also choose to donate parts of your data set to causes that you support, such as cancer research, rare disease or more general population health research. Because it is your data set it is entirely up to you how and what you use it for.

How researchers benefit

Healthcare researchers around the world, from institutions to Pharma to government agencies and academia are all looking for better insights and access to relevant, structured data. The Sovereignty Network can assist in at least three ways…

1) sending out field surveys and questionnaires to precisely the right type of person with the precise research criteria that they are looking for.

2) The research community has perennial issues undertaking correlational research because it is difficult and time consuming to relate a cohort to multiple variables. Now any researcher can do this from their desktop. Even without a complex medical record, members may find themselves receiving offers to be part of correlational research. This includes people before they get sick from a chronic condition due to lifestyle or environmental factors.

3) Similarly, cause and effect studies are very difficult and expensive to execute. Pharma companies, policy makers, public health, academia etc will be very well served by the TSN platform to create layers of cohorts to test the causality of variables to health outcomes much more easily. Typically, this requires large cohort sizes and a long follow up period (years to decades). Think of the Framingham Heart Study, or the US Veterans Research Studies.

How The Sovereignty Network gets paid

How do we get paid? We earn a 20% transaction fee on the value we help you generate as a Data Owner. You keep 80%. We think that is fair, aligned and scalable. It is also transparent. Your data is not sold or marketed; no ads are sold. Our success is directly tied to your success. We like that.

However, as the network grows our goal is to transition to be a member-owned and governed organization. A decentralized global network. At that point the members themselves own The Sovereignty Network, proportionate to the value each member has contributed. In this way, the entire data set can continue on indefinitely, governed by its own charter without being corrupted by large amounts of money held by only a few hands. The Sovereignty Network needs to become globally owned and controlled. If you will excuse the Abraham Lincoln reference, it needs to be “of the people, by the people, for the people”.

Kicking this off with a Kickstarter

Aiming for this to become a global community and movement for everyone to be able to get, build and own their healthcare data set, I am pleased to announce here exclusively at The Health Care Blog for all readers and friends of readers that we are rolling all of this experience into a global Kickstarter campaign starting today.

Why a Kickstarter Campaign? This only works with people using it. Seeding a marketplace so that supply and demand adequately match for quality transactions is vital. (Otherwise known as liquidity and transparency). 70% of funds raised goes back to each person who pledges through The Sovereignty Network selecting and providing you with your own personal Data Coach to help advise and assist you in building up an accurate and complete data set, wherever you may be. The remaining 30% goes to ensuring we provide the best possible experience for you as the marketplace starts up.

A marketplace designed for patients and those that serve them.

The platform already works. We have already onboarded top patient advocates, data standards experts, and researchers to test the system. What is needed now is your support to turn this into a global Movement, and a great first experience for the initial founding members. Everyone who supports the Kickstarter campaign becomes a Founding Member.

A CODA for those interested in Data Ownership

The perennial Custodial Data constraint in healthcare (i.e., they know it is not really their data at all – it is just that possession is 9/10 of the law) means that you are the only person who can legally and morally allow all the different components that make up a curated, accurate, identifiable and valuable set of health data about you to be shared without encumbrance.

But not everyone in healthcare agrees that “owning data” by patients is the way forward. We beg to differ. Healthcare providers can still “own” their set of data about you, but you need to own your copy too. This becomes clear when you consider something known little about: how privacy rights got divorced from property rights originally when privacy became its own separate branch of law over 130 years ago. I wrote about this recently https://sovereignty.network/blog/enjoining-privacy-rights-and-property-rights-can-assist-patient-data-rights

As I write in the article, a hugely influential law paper back in 1890 entitled “The Right to Privacy” by Warren and Brandeis deliberately placed what they proposed as a universal right under laws concerning the right to Life, rather than under the traditional branch of law concerning privacy, that of Property rights.  

This may not have mattered, except that in the 1950’s the powerful asset that today is data was birthed into the world through the rise of computers. Facebook and the rest of the tech barons enjoy immense power over “private” data simply by owning and controlling the servers that house data – including data that we create from our bodies and from our own thoughts and actions. Lumps of metal and silicon they may be, but with the transformational magic of software applied to the data that course through those servers data can be transformed into knowledge and insights to create huge economic value. Servers are lumps of property that are extremely valuable beyond the sum of their parts due to long-standing property rights.

The bottom line is that in an era where data is the most valuable asset on the planet we need to stake out a data set of our own. If an individual has both clearly defined ownership and control rights on top of building the most valuable healthcare data set available about them anywhere, they can then license or otherwise utilize that most valuable copy as they see fit – including using it to ensure more appropriate healthcare provision for themselves and their family. 

Hamish MacDonald is CEO of The Sovereignty Network