Data ownership, good or bad?

[Not_Too_Open_Minded]

Data is a valuable resource, often even referred to as the world's most valuable one. With law like GDPR in Europe and HIPAA in America, there is already some platform for data ownership. 

An emerging topic in American culture, a decade old topic in American health IT, is highly debated. Many patient advocates say it would be a solution to interoperability issues. Many tech companies such as EHR vendors claim the data belongs to them. 

Do you think data ownership is good or bad? If we lived in a society where you own all your information as property and earn a profit or control the sales of when EHR vendors sell your de-identified medical records, for Google to sell your browsing habits, or for any of the buying parties of your data to disclose how they intend to use your information. Do you think this would benefit or harm society?

In my opinion this could be inevitable. As automation takes more jobs and information grows in value. Our data could be our largest asset one day. Especially if you own your lineages data in about 20 generations from now. I think this would also give the general population a fair amount of sway in markets as they could control which companies have access to our data. 

The only potential cons I see are that this could force the poor into giving away all their privacy. This could also turn privacy into a commodity. Which could be countered with say a independant committee that advises the public on who to and not to sell their data to; but would only work if the middle and upper classes abide by it. 

Thoughts?

[iNow]

9 minutes ago, Not_Too_Open_Minded said:

Do you think data ownership is good or bad?

It is always both. Whether or not one owns their data, that data is available and accessible through various systems and networks across the world.

What matters is how that data is protected, and how those who misuse it get punished and prosecuted.

Even if one owns their data, there will always be bad actors who seek to leverage it to their own benefit. A focus on protection and oversight is IMO more appropriate than a focus on ownership. 

Unless perhaps I’ve misunderstood your intent and you instead meant to discuss the right to be forgotten?

[Not_Too_Open_Minded]

9 minutes ago, iNow said:

It is always both. Whether or not one owns their data, that data is available and accessible through various systems and networks across the world.

What matters is how that data is protected, and how those who misuse it get punished and prosecuted.

Even if one owns their data, there will always be bad actors who seek to leverage it to their own benefit. A focus on protection and oversight is IMO more appropriate than a focus on ownership. 

Unless perhaps I’ve misunderstood your intent and you instead meant to discuss the right to be forgotten?

The data isn't always accessible. For instance patients often struggle to collect their health records. If you download your Facebook data, it's not formatted in a comprehensible manner to the average person. Out of the multiple companies that offer risk modeling services to health insurance companies, they don't have to disclose everything with you that they do with your data. There's still lots of grey area here, but for the most part your correct about being able to capture your information. 

 

Agree on inevitable bad actors. I would think data ownership would help leverage handling them? Protection and oversight equally as important. In what ways do you think we could improve protection and oversight? Just higher demand for encryption compliance with tech companies? Oversight, maybe government or committees to raise public awareness?

[iNow]

38 minutes ago, Not_Too_Open_Minded said:

The data isn't always accessible

Elaborate 

[Not_Too_Open_Minded]

23 minutes ago, iNow said:

Elaborate 

Patients often struggle to obtain their medical records.

Most states require payment through a HIPAA guided process if medical facilities or physicians refute access to the records. So first hill to climb is often haggling secretaries and doctors until they either A. Obtain their information or B. Pursue them under HIPAA laws to pay for the record and apply to have costs reduced if they're out of budget. 

Once patients have their record it's still not legally required to be in full. While billing, lab work, test results are required by HIPAA. Doctors notes, assessments, wellness plans aren't required. So misdiagnoses, malpractice, negligence is harder to prove. 

Then there's third party risk modeling services. They comb through people's data and determine potential mortality, cost of care per year, potential of developing future co-infections, etc. Utilized more by payers than providers. They often have access to patients medical data and don't have to disclose with patients what they determine about them.

Referencing healthcare here because it's the most obvious example of issues with people and access to their data.

[iNow]

3 minutes ago, Not_Too_Open_Minded said:

Patients often struggle to obtain their medical records.

So, you’re conflating hard to access with inaccessible?

[Not_Too_Open_Minded]

So you're refusing to read the part "the record is still not required to be in full"? 

[Prometheus]

I can think of some more cons.

I'm not sure how valuable our data will become. At present estimates vary wildly from less than a few cents to a maximum of $100, though most estimates seem to congregate around a dollar. Even at the most optimistic case that's not enough to be used as a currency. The value of data would have to increase massively if it were to become useful.

And if it did increase much, i can imagine that most companies would just switch to scraping your data from elsewhere. They don't need direct access to your healthcare records, they could just access your shopping records and infer your health status from that (already possible).

I also think you would need global legislation in place to deny companies the companies the legal grey areas they need to operate. That could take decades - if ever.

Also i think the younger generations are already used to their data being all over the place and would resist change, even if it were in their interests, as companies make things less convenient for them and blame this new data legislation.

I think this horse bolted long ago: which is something people working in general AI fields have been warning of  (e.g. Nick Bostrom😞 changes could occur much faster than traditional social and legal institutions are able to keep pace with. 

[dimreepr]

4 hours ago, Prometheus said:

I think this horse bolted long ago: which is something people working in general AI fields have been warning of  (e.g. Nick Bostrom😞 changes could occur much faster than traditional social and legal institutions are able to keep pace with.

Indeed: I read that, if the product is free, the product is you.

Edited January 30, 2020 by dimreepr

[Not_Too_Open_Minded]

8 hours ago, Prometheus said:

I can think of some more cons.

I'm not sure how valuable our data will become. At present estimates vary wildly from less than a few cents to a maximum of $100, though most estimates seem to congregate around a dollar. Even at the most optimistic case that's not enough to be used as a currency. The value of data would have to increase massively if it were to become useful.

And if it did increase much, i can imagine that most companies would just switch to scraping your data from elsewhere. They don't need direct access to your healthcare records, they could just access your shopping records and infer your health status from that (already possible).

I also think you would need global legislation in place to deny companies the companies the legal grey areas they need to operate. That could take decades - if ever.

Also i think the younger generations are already used to their data being all over the place and would resist change, even if it were in their interests, as companies make things less convenient for them and blame this new data legislation.

I think this horse bolted long ago: which is something people working in general AI fields have been warning of  (e.g. Nick Bostrom😞 changes could occur much faster than traditional social and legal institutions are able to keep pace with. 

So a person's data value varies, but it's not impossible for someone to be worth thousands in annual data sales. There's even some economists who've wagered the average U.S citizen to be worth over $1000 a year in data sales. You heard of the app that pays you to not text and drive? It's like $20 every few months. They sell your GPS data and give you a cut. Certain clinical trials generate data worth thousands. Some universities are paying thousands for a stool sample if you have the right anatomy for gut microbiome study. Your data is worth what people are willing to pay. I do data procurement and assessment for a R&D company. I go and find medical data sets they're looking for to train their A.I models on. We're talking data sets of hundreds to thousands of people, that cost anywhere between $3,000 - $50,000. Which doesn't equate a lot per individual value but you also have to consider the data is taken at face value with expecting some clerical scribe errors or changes in health. I've seen statistics that state medical records errors at 70% per patient record. The quality of data is a big thing here. 

I don't believe the horse has bolted long ago. Per A.I safeguards, being able to strip A.I of the data that runs them is probably our best solution IMO. I think the horse has just entered the race and people are beginning to learn it's name. 

4 hours ago, dimreepr said:

Indeed: I read that, if the product is free, the product is you.

9/10 that's correct. Facebook for instance, if you watched the Zuckerberg trial about user data he dodges lots of questions surrounded that and continues to retort with "we sell ads." They sell data too, lots of it. However there are platforms which are free and don't carry that sentiment. Wikipedia's founder is trying to launch his own social media network. They talked about charging for it but there's also been talk of it being free. There's plenty of platforms that are free like video games. The most popular ones are often free and only sell in game content. 

Also would like to add I contacted Wikipideas founder Jimmy Wales about his thoughts on data ownership. His response - "it's a monumentally horrible idea." I couldn't get him to explain his reasoning. I'm sure he has solid reasons and would've really liked to hear them. 

Would also like to add there's other Tech influencers who think it's a monumentally good idea. Others who think it's bad. I'm interested in hearing all sides. 

[Prometheus]

4 hours ago, Not_Too_Open_Minded said:

There's even some economists who've wagered the average U.S citizen to be worth over $1000 a year in data sales.

Per year? I've not seen estimates that high before, id be interested to know how it was derived. Do you have any links to them?

 

4 hours ago, Not_Too_Open_Minded said:

You heard of the app that pays you to not text and drive? It's like $20 every few months. They sell your GPS data and give you a cut.

I've not heard of it. Isn't texting while driving illegal anyway, or is that just UK? Sounds like a lot of money - what's the data being used for,? How is it generating wealth for the buyers?

 

4 hours ago, Not_Too_Open_Minded said:

Certain clinical trials generate data worth thousands. Some universities are paying thousands for a stool sample if you have the right anatomy for gut microbiome study.

But presumably the data is only worth that in aggregate? I can't believe unis are willing (or able) to pay that much for single stool sample - which uni is offering this?

 

4 hours ago, Not_Too_Open_Minded said:

Your data is worth what people are willing to pay.

That's true. I wonder if in the future some types of data will depreciate. Take the stool sample example - once the human microbiome has been well documented and catalogued who would be willing to pay for it again? There is a current trend in machine learning to work with sparse data sets, meaning learning algorithms of the future won't need the enormous quantity of data current methods do.

It's hard to imagine what form an automated economy will take, what markets will exist and how data can be used to generate wealth in that environment. There will also be a difference between the anglosphere and sinosphere, but perhaps that's a separate issue.

[Not_Too_Open_Minded]

8 hours ago, Prometheus said:

Per year? I've not seen estimates that high before, id be interested to know how it was derived. Do you have any links to them?

 

I've not heard of it. Isn't texting while driving illegal anyway, or is that just UK? Sounds like a lot of money - what's the data being used for,? How is it generating wealth for the buyers?

 

But presumably the data is only worth that in aggregate? I can't believe unis are willing (or able) to pay that much for single stool sample - which uni is offering this?

 

That's true. I wonder if in the future some types of data will depreciate. Take the stool sample example - once the human microbiome has been well documented and catalogued who would be willing to pay for it again? There is a current trend in machine learning to work with sparse data sets, meaning learning algorithms of the future won't need the enormous quantity of data current methods do.

It's hard to imagine what form an automated economy will take, what markets will exist and how data can be used to generate wealth in that environment. There will also be a difference between the anglosphere and sinosphere, but perhaps that's a separate issue.

Yes per year. So you can read the white papers from companies in the space of helping people capture their data. Humanity.co estimates the average person to be worth around $1000 a year. They're a United States based company, ran by some cool folks. Their CEO is a former c-suite executive of the largest medical data brokerage in the world IQVIA. Wibson is a EU based company also ran by some cool folks, they estimate your data being worth around $240 a year. 

Article conveying how to price our data - http://stenor.github.io/

Article explaining the trouble with pricing data and more into the ethics of our information handling 

- https://www.google.com/amp/s/theconversation.com/amp/how-much-is-your-data-worth-to-tech-companies-lawmakers-want-to-tell-you-but-its-not-that-easy-to-calculate-119716

texting while driving is legal in certain states here in the U.S. the app I was referring to is On My Way. The data is sold for marketing. They don't sell to 3rd party brokers but trade data directly with customers for advertising. https://www.dailydot.com/debug/onmyway-app/

Florida state university was collecting stool samples years ago, but I can't find anything on it. Here's an article on a company that has played people in the 5 digits for their poop. (You have to fit very certain criterias to be paid that much) https://www.google.com/amp/s/www.washingtonpost.com/news/speaking-of-science/wp/2015/01/29/you-can-earn-13000-a-year-selling-your-poop/%3foutputType=amp

 

Data value will depreciate but it will also rise with new research and findings. Expansion of private business or government state development. 

 

 

 

A big shortcoming would be absolute transparency. If we did build the future society off data ownership, it would mean that absolute transparency could render the entire system of commerce obsolete. "Why purchase data when you can just look it up for free"

[Not_Too_Open_Minded]

https://www.fiercehealthcare.com/tech/federal-court-says-hhs-can-t-limit-fees-for-third-party-access-to-patient-records