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.