Talk about confusing the patient and at the same time hammering on Doctors and Hospitals to get 5% of the patients to access their medical records on a portal that contains advertisements and/or endorsements of data selling 3rd parties can be an issue, so “what the heck is in that portal”…

We all know advertising along with the current “data selling epidemic” taking place offers high levels of disruption.  I see it all the time with all these new “innovation” apps and very few offer anything new and most are somewhat of a copy cat, providing the same function of something that’s already out there, but new screens, and few little buzzes from where you click and navigate makes this a whole new brand imageof app to fall all over.  Consumers can’t identify this but the developers and Query Masters can and feed on it and we get this glut of apps that few use.  I’m probably pretty vocal that way as I used to code and I used to sell too so I’m a weird hybrid out here in the medical blogging world and that’ why you see these types of post over here and nowhere else:)

You do have to look at the impact of data selling out there as it is alive and well and does disrupt and makes money for corporations, like insurers today.  If you have not ever looked at some of the insurer subsidiaries do it, breathtaking as well as all the businesses they are in.  I try to point all of this out as best I can following not only the money but the data as well.  So as a patient out there and there’s more than just me talking about it when a patient is looking at a portal and they see promotions for mobile apps that are part of the quantified self move on the portal advertises and promoted, and the patient has read a little about the data selling, do you think one might ask “what’s that doing on the portal”..could be.   I thought this video was interesting as it shows some visual ideas without promoting any particular vendor as to where we are headed with some of this.

This adds to the confusion of doctors trying to get patients to participate in the basic requirements of meaningful use in just accessing their medical records. 

You see wellness programs promoted and we all should know by now that insurers own a bunch of them and we get back to mining for data for sale again here as the marketing for predictive behavioral health is duping you in a bit.  Sure there’s value in identifying patterns and the human brain can do that too and the capabilities are being a bit oversold to the point to where “everyone needs to have their behavior fixed” so even the healthy people who enter such programs, no appreciation for where they are, but let’s fix them too with this portal.  We have to get them to enter the data to fix them:)  It came to heads with Penn State wanting to fine all users who did not participate $100 a month..pretty strong language there and people revolted and for a good reason as again everyone has been judged and needs to be “fixed” whether they need it or not.

Wellness Questionnaires Coming Under Scrutiny, Federal Lawmaker Wants Rules–Many Wellness Programs Are Subsidiaries of Health Insurance Companies and Most Mine Data For Sale

I have appreciation for the work at the ONC and I’m sure they are very aware of this as well and it probably gives them fits at times as well when keeping on track with meaningful use parameters to be met.  Again we come back to this data selling disruption and epidemic out there interrupting and intersecting with the functions of getting to the value of the “clinical data”.  It’s tough when you have this data selling side show going on at the same time and the search for real “value” needs to be at the top of the list. 

The other day there was an article about the 10 biggest mobile health investments and most of them appeared to have a “data selling” business model.  You can read it if like but I made a case about one of the start ups and their poor marketing and telling me a blogger “how poor they are” and that I really need to promote them so they can more data to sell.  I’m sure they didn’t expect the rant of the duck but again I have two focuses and look at both sides.  A VC sees an almost immediate revenue stream from selling data = funded?  I know these are all designed to hopefully benefit a consumer but remember number one benefit is to get money to the start up and of course with data selling, it becomes “free” for the consumer or almost “free”. 

10 Biggest Mobile Health Investments This Year Appear to Have Business Plans With Profits Contingent on Selling Data for Profit And VCs Seem To Like Funding Models As Such, Look At The Numbers…

We just had the new HIPAA rules come out too and already there’s a clash with technology with abiding by the rules.  It appears there’s no where a patient can really decide that a certain record can be withheld from an insurer as nobody has written the code in medical records to do that, plus if not paid by cash, the insurer gets the claim and will be out there hunting for the medical record documentation at some point.  Insurers love analytics and data and are hiring Quants in groves to do more with every stick of data they can buy or have in house to add more profits to the bottom line.  How ethics come in here…well that gets real gray and we kind of circle back around to the data selling epidemic.  Here’s what’s already happening when patients want a particular record to be private, “the little drawer of paper charts”..and nice we have doctors that work with us as our partners to do this and it’s not often but when needed there’s a probably a good reason other than I’m just going to say no.  That’s where we get back to the doctor-patient relationship that needs to remain strong.

Digital Doctors” Little Drawer of Paper Charts” Stands to Grow In Size Due to New HIPAA Laws And Insurer Context, Gov Can’t or Won’t Model?

Everyone seems to be jealous and critical of Epic but you know what, they basically are the Apple, Microsoft or what you want to call them in the medical record business and I feel a lot of this goes back to their CEO, Judy Faulkner, who wrote code and the initial software  and keeps the development largelyimage in house, and there’s still a lot of Visual Basic in the software, still pretty solid.  Do you see that with many of the other medical record companies, very few(e-MDs is one)  and most are the big conglomerates like Allscripts who blew it a couple of years ago not telling shareholders the truth about all the code needed to blend two different software program…CEOs not involved in the heart of the software blow it and do things like that.

Epic provides “MyChart” as their personal health records which is tethered to the medical records and allows patient interaction and it’s been around for a while and it is any wonder that they have 22% of the ambulatory market out there with creating a portal that works well and doesn’t have stuff up there promoting data sellers on the portal.  Again there’s a lot to be said to having a “controlled environment” with software development.  A little lesser known is the LUCY Freestanding PHR from Epic.  This is for patients who want to take their data form MyChart and other entities and keep their own untethered PHR.  You could say it is similar in nature to HealthVault in a way but you need have a “MyChart” PHR to use it as that’s where the population of the data starts. 

“Lucy is free of the two primary obstacles to patient PHR adoption:

  1. There are no advertisements on Lucy.
  2. Epic will not sell patient data for secondary uses.

You can see on websites like the University of Wisconsin where information is made available to members/patients as an example.  Now there are efforts to extend the timing for meaningful use and this issue with getting 5% of the patients to view and download their medical records is running interference for the data sellers..making it more difficult for doctors so when you see the Epic solutions, and the two reasons they list, it’s like a no brainer to figure out what’s going on:)  They don’t have those 3rd party elements there confusing consumers.  So complain about Epic all you want but they are not selling your data nor endorsing those that do. 

The data selling epidemic is exploding and getting bigger and bigger all the time and certainly there are some areas to where data is provided for legitimate research and when you look at what Kaiser has done with their registries we are getting some good quality information and this is separate and not in the same ball game at all of the “smash boom bang” consumer data mining for profit that is taking place.  I’m sure this has to represent some element of frustration at the ONC as how do you create standards with all of this going on to get to the core of valuable clinical information for doctors and patients? Sure Epic and Kaiser are both non profits out there and we hear about all money they make but again interesting how both are not selling data.

Kaiser Permanente Registry Information Pays Off With Hip and Knee Replacements For Patient Having Double Hip Surgery (Video)

I’d be quitting too if I were at the ONC in view of all of this as it’s frustrating to create standards and have all of the greed and money making diluting what they do on the sidelines.  Secondly, how in the world do you testify to Congress on some of this as they don’t get all of it and I have sounded like a broken record in wanting to re-establish the Office of Technology Assessment and incidents like Cruz yesterday and McCain a while back clearly show the levels of understanding are not there and they won’t do much to learn..what’s up with that?  I did a pretty pointed post on this topic and even tweeted this post directly to John McCain.  I don’t know how often he checks in but it was kind of funny that during the Cruz show he was stated to have been tweeting about a television show he was watching during that time (grin). 

Senator John McCain: Another Demonstration of Why Congress Should Reinstitute the Office of Technology Assessment, When Education Takes Place, Less Distractions With Boredom And More Respect for Consumers…

Based on what I am seeing, it looks like it’s time to cleanimage up the portals and even the advertising on some the websites from some of the advertisers and come clean with consumers on who is selling your data, what kind of data they sell, to what companies or governments and have this flat out transparent on a federal web site.  I’m not too particularly happy knowing that Walgreens make about a billion a year selling data, our data they get for free and then I read all their article about engaging the patient, sure when there’s big money to be made. Looks to me like the real winners here with both EHRs and PHRs are the ones who are not selling your data all over the place…an omen? 

Here’s what the FTC  (link below) should consider with all of this as well as Congress as nothing will change until some regulation comes in here, and in the meantime efforts at the ONC get stymied, people get frustrated and quit and those that profit like insurers, keeping putting more profit dollars down to their bottom line.  Here’s a video with a game made in satire to exploit data selling  as well so it is well documented in more ways than one.  BD 

FTC Tries to Bring Strong Case for Consumer Protections With Use of Data–But Nothing About Creating IT Infrastructure Path to Allow Regulation–Gov Can’t or Won’t Model?

"Customers mentioned leaving MedSeek due to unmet product expectations, high costs, or an enterprise EMR strategy," the KLAS report said. "A quarter of Intuit's customers reported plans to leave -- three times higher than the market average."

It's unclear whether shortcomings in these and other third-party products are to blame for their decline. However, as in other areas of health IT, many providers seem to be following a single-vendor strategy for their EHRs, and that might include portals.

Meaningful Use Stage 2, which begins Jan. 1, requires providers to allow patients to access their health records electronically. At least 5% of patients must "view, download or transmit" their information. In addition, providers must use their EHRs to send reminders for preventive and follow-up care to more than 10% of patients with two or more office visits in the last two years. They also must use EHRs to identify patient-specific education materials for more than 10% of unique patients seen during the EHR reporting period.


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