Those are a couple issues that come to mind for me reflected in the title. I can’t help but think every time I fill a prescription at Walgreens on how much money they make selling data, like just short of $800 million in 2010 and just gave them some more data to sell. I know we have standards and best practices but they should be “best practices for care” and not all “best practices for money”. They get mixed up out there a lot. Granted if you can do both then you have a winner but not happening out there with big strides as the focus for the money seems to cut in front of the line all the time.
Have you ever tried to help someone with understanding using a PHR and sell the other person on the value? I have, but so many I read here I usually find out at some point in time they may not be using one but on the web are huge magpie that likes to tell everyone else what they should do:) I’m a human too and I don’t jump into changing a behavior of mine over night either as it has to be something I want or where I see value. With oodles of apps out there to include tons of BMI apps and alert apps we have a lot of duplication too so lots to choose from and think of it this way as being like shopping, too many choices you walk out with nothing. Same thing here.
In addition we have all the insurers wanting “immediate” behavior changes and they want to track you step by step and that’s another reason people are fearful and I must say it’s not a bad reason as the more you data you get out there the more queries they come up with to “score” or measure you. Why? All this stuff makes money. Data mining and selling the subsequent analytics they create makes billions in profit. If done right and your information is not sold all over the place I think there might be a better audience here but the data selling is big thing as flawed data is on the rise, been writing about it here for 2 years. I used to write software so I know how the matches go on the unique IDs and how to query down for sub matches and so forth with simple linear methodologies. Any data base person has those skills and many more.
Now we have flawed data sold and if it is not a “real time” update, which most still is not anymore it’s not current. Most sellers don’t care about who they sell to either, just send money please so your data from last week that changed this week is now flawed, either that or some rogue algorithms may hit the wall with your file. I have had that happen to myself where my car insurance company thought I left information off and I didn’t. They did an address match and I had moved 6 months prior. They found other names at my old address and added them as “second drivers” on my policy which clearly shows my new address as I update information immediately..I saw that and went huh? Their machine learning thought it was smarter than me and it could be but not if it working with “flawed data”. So that’s in a data base of theirs so what’s to stop them from selling this information to someone else and gosh knows what kind of data they are going to query it with…this goes on all the time…and one of the big reasons flawed data is on the rise.
Most companies have a budget to repair some of this and it is not big and thus the don’t have any incentive to fix it either as they sold the data and their money for the sale is in the bank. If you want to laugh, read my story on Google Plus and their algorithms. How does this happen when one day out of the blue my name does not meet their name policy? I think in the Google case we had a rogue algorithm that got activated with the machine learning as no human made this call. They said sorry and fixed it. I’m still laughing on this one though as there’s a lot of Barbara's out there so must have been that last name of mine of “Duck” that told the machines I was a bird and not a person as when combine the dictionary meaning of “duck” that’s enough to choke a little machine learning technology. The Google thing has been floating around over with some MIT readers too:) It’s the same stuff that happens on stock exchanges except mine is nonsense and the stock market might be your 401k.
“I’m Sorry Your Google Plus Name Does Not Comply With Google “Names Policies”…Barbara “Duck Algorithm” & Was Using My Real Name All Along…Killer Algorithms Chapter 52
So again why should consumers trust devices as this data might be sold to another entity like a life insurance or health insurance company calculating a mortality rate on you and it will pop up somewhere when someone is looking at your data somewhere and we don’t have enough people out there in the working world that know how to work with “flawed data”. Believe me they take every tiny scrap you can find and sometimes put it out in a non linear fashion hoping to find some relationship with millions of other bits of data so they can write a mathematical model, dump in some kind of a P value (watch the videos on the left, top one and Charlie Siefe will tell you about P Values and how they get faked) and score you. If the crappy flawed data were out of this there could be some value but it’s not because again as these data bases get queried with gosh knows what you don’t know what they are going to come up with.
Look at the bit rip FICO is running. Do they buy data from people selling it acquired from devices, probably. If it’s for sale someone will buy it. It this this not one of the biggest examples of ALGO DUPING to have a credit company claim they can query your credit information with some other data they bought or mine and score you from zero to 500 if you will be a patient who will be medication complaint…nope…this is done for money as they sell their information to pharma and insurance companies, the pitch right on their site and I guess they forget consumers read the web too:)
FICO Analytics Press Release Marketing Credit Scoring Algorithms to Predict Medication Adherence–Update (Opinion)
I had a talk about this with Sean over at HealthVault a couple years ago and I said I thought it was great that the results go directly to the PHR, then the patient can choose what they want to share, and to me be it a scale, pedometer or what every that’s the way to go and then choose to share with your doctor and sadly for the billion dollar data seller business they get cut out of the picture and can’t make any money off you but you get to choose who sees the data. I though the one story about Fitbit was a scream too with profiles showing up on Google searches…again the consumer asks how secure is my data and what are you selling?
Fitbit Profile Sexual Activity Shows Up In Google Search Results–Default Privacy Settings Allow Search Engines To Post
Next jumping up your backside are the people wanting this data and granted you think they are really wanting you to be healthy, no they want the data to sell. This plays out like a win-win at times as wellness companies, and a lot of them out there are either partners with or are owned by insurance companies can provide a lot of the data for sale too, so again a consumers may have some great luck with wellness coaching as it’s a human to work with to help change behavior patterns but darn do they have to sell that information too! The coaches themselves are good people as better health is their goal but again that old lurking nightmare of how much of my personal life here gets sold? Some of the wellness companies put the coaches on pay for performance too so you could end up with one a little bit overzealous as if you don’t change behaviors fast enough they won’t meet their quotas.
In some places in the country pharmacists also have quotas as we have heard reported on the web, lately with CVS with the LA Times getting a hold of some internal emails with one supervisor telling another they were not meeting their “refill” quotas. Then in some parts of the country you have United Healthcare giving pharmacists as Walgreens pay for performance to sign you up in their programs or the YMCA and I’m sure there’s a tax break in there somewhere for that. After such a program is announced you can usually count on a United report stating that whatever their new service or product will be saving billions for healthcare and that you somehow are part of the drag on the US Economy.
Again these free assessments create data to sell to someone or company so, so see why mHealth is slow, no trust and of course they want “immediate” behavior changes. How many of their executives live though any of these processes, just curious:) All this goes to enhance the pockets of big business, and again the flaws are growing too. There’s been talk too about Walgreens selling insurance so what’s next plopping a policy change in front of your face after a simple test for diabetes and of course the data gets sold. Your prescription data has been sold for years and United is one of the biggest generators of data out there and sells tons of it if not directly then through one of their huge daisy chain of subsidiaries.
I see Dr. Crounse mentioned here with his comments and he’s right with incentives for doctors to move it along faster, as the doctor/patient relationship should not be lost by all means but from what I wrote above you can see how even they might not want to jump in there to expose patients to their data being sold all over creation. Doctors know this as they were one of the first groups to experience data selling years ago before it became the epidemic it is now.
You want more participation, then make it easier and more appealing with less duplicated programs and quit selling every inch of our body, profiles or what ever data you get your hands on with consumers. It’s a big white elephant out there standing square in the way, and it’s called “trust”. Corporate USA doesn’t have it but has tons of cash in the bank. Time to license and tax all data sellers to regulate this as it is an epidemic and hurts creating new jobs too when a company can make millions or billion selling data and not have to build a new factory or hire employees.
So everyone can sit there and be disappointed or they might think about looking at the root of the problem, consumers don’t trust and there’s not enough transparency. We all like to know that there’s real human interest with others in developing better health behaviors but no excitement for corporations, banks, etc, making a buck off our backs. If you would like to learn move use the link below to learn more about how some of these processes work, it’s the algorithms running on servers 24/7 making life impacting decisions about you with a big increase in flawed data that continues to erode trust. Realize too that next time on the phone when you are asked to be recorded, it’s not humans but you opened the door to a few thousand algorithms that are going to come in an further evaluate you and feed those analytics into some data base they company uses and it will more than likely be for sale too. Time to license and tax the data sellers so consumers can see who is selling what kind of data to who and that might just help consumers with a bit more confidence as they know they are not being slammed with the “data snatchers”. BD
Big Data/Analytics If Used Out of Context and Without True Values Stand To Be A Huge Discriminatory Practice Against Consumers–More Honest Data Scientists Needed to Formulate Accuracy/Value To Keep Algo Duping For Profit Out of the Game
The number of technical tools available to help patients live healthy lifestyles or control chronic health conditions has grown considerably during the past few years. But the percentage of patients who use some form of technology, such as mobile apps, to track health indicators has remained virtually unchanged for three years.
The Pew Internet & American Life Project published a report Jan. 28 that found 69% of U.S. adults track at least one health indicator such as diet, exercise or weight. The survey of 3,014 adults conducted between Aug. 7 and Sept. 6, 2012, found that 49% monitor their progress in their heads, 34% track the information on paper, and 21% utilize some form of technology, including mobile apps, which 7% use. The results mirror findings from a Pew survey in 2010.
“As a tech industry thought leader, I’m disappointed when I see a survey like that,” said Bill Crounse, MD, senior director of worldwide health at Microsoft Corp. “But as somebody who has served as a physician and was involved in patient care for 20 years … I’m not particularly surprised.”
But Dr. Crounse does not foresee an immediate boost in the number of people using technology to track their health. Until physicians are given incentives to encourage use of mobile tools, he said, adoption will continue as it has thus far. It will be isolated among those who are either genuinely excited by the technology, or those chronic disease sufferers who have a real need to use it.