Who owns and who should manage and analyse your different types of data?

I would like to run a little survey here and ask QS members how they envision a future in which people are empowered to gain more knowledge about themselves through access to all their data, health, genomic, fitness, self-recorded measurements, and being given the ability to share it or analyse it themselves, through apps or tools that access it.

My question refers to this article I wrote: http://omicshelpdesk.com/fitness-diet-clinical-genome-microbiome-data-it-is-all-yours/

Do you envision very powerful smartphones (with terabytes of storage) where you carry all that data around and you share it with doctors or with apps that analyse it?

Do you envision the same as above but a different device rather than your smartphone, say your personal laptop, or some new device that you expect to be invented just for that?

Do you instead envision storing all that data in a secure and personal space in the cloud that has apps and software to analyse it for your own benefit but also make it available for research either as a donation or for a fee?

Or do you envision keeping it as it is today, in different places, and allowing those who own your data to manage it for you?

Or is there a different scenario not proposed here that you foresee in the future related to who manages and analyses your data?

In my case, there is a clear difference between what I would personally like, versus where I do expect the industry to go.

What I want:

  • my QS data kept only local, gathered using a variety of Apps on devices from multiple vendors, not stored on my mobile devices that I take out of home, but rather kept on a personal cloud server that I can remote into from outside my home network when necessary. If I want to share my data with my health providers, I’ll push that data to them from my personal cloud.

What I expect the industry will actually do:

  • unfortunately a persistence and growth of the current business and data models: numerous Apps that collect portions of QS data into their own databases and cloud stores which are “mined” and “sold” without any benefit to me; that are generally NOT interoperable; with only a few of those Apps choosing to also utilize one of several common cloud stores (which will of course separately “mine” and “sell” my data without any benefit to me). Separate Apps or proprietary interfaces to different collectives of health care providers.

Basically, there is no FINANCIAL incentive for EVERYONE (health care professional, hospitals, insurance companies, App creators, device creators, content creators, etc) to create, adpot and implement one single common standard for all aspects of health care/QS data (in terms of ontology, storage, transfer, and analysis). There are all sorts of efforts by all sorts of parties and organizations, and thats THE PROBLEM, there are 50 solutions being worked on, not ONE solution. History shows us over and over that this fractured model will persist and grow, until most fail, then the few remaining may or may not attempt a final interoperability. Again, the incentive for that final interoperability has to be financial (or regulatory), else it will not happen.

Of course, all the above is just-my-humble-opinion.

1 Like

Great insight Mike! Thank you for sharing your thoughts! And I think you are spot right in comparing what would be advantageous to us and what the industry will do. I have some more thinking to do on that topic!

I like what I’m seeing in Apple Health. Apple allows companies to write to it and vice-versa and you can control what each can see. If a Health app doesn’t write to it then I move on, even if I bought it thinking otherwise. In fact it has replaced several apps that I used previously.

1 Like

The biggest challenge isn’t aggregating all your data, but figuring out what to do with it, especially at the n=1 level.

Having all your data stored in a single, authoritative location would make things easier, but that isn’t likely to happen, and isn’t really necessary, either.

It’s hard to say who really “owns” most health data; the real question is who has what rights to it.

You can share certain kinds of data for research via Open Humans, either by uploading it, or by granting them access to it at the source.

1 Like