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No Privacy

26 May

I think people have given up on having a sense of privacy online. Here is a comment from a local Social Media Group about his perception on the privacy issue in light of the latest Facebook questions.

What’s the big deal?

“Your privacy was dead long before Facebook made this change,” Schwartz said. “Privacy died a long time ago.”

Marketers have been collecting all kinds of personal data on web users for the better part of a decade, Schwartz said, and sometimes its more personal tidbits that anyone would be willing to share on Facebook. “Marketers aren’t doing this to be malicious, they’re doing it to optimize your web experience … to sell you a car.”

And it’s not just in Facebook. Anytime you send an e-mail, surf a website for a product, or offer an online review, information is captured, tracked and passed along to a marketer. The only way to opt out of the information sharing is to opt out of offering the information in the first place.

The bottom line is clear, Schwartz said: “Quit disclosing crap you don’t want people to see.”

If we think that we can control what others know by not posting things that we don’t want others to see, hear, read or infer we are missing the many uses of a social network.  You have no control of what others may post, say, photograph or capture on video.  I don’t think the problem is just about what we think we can control.  I think the problem with privacy is all of the data that we have no control over.


As our lives continue to become more and more digital we have more and more to try and control, in more and more places.  If we don’t start to manage all aspects of our digital selves and begin to think about how to approach this problem we will surely be unable to control it.

Don’t think that it is appropriate for others to have your personal data.  It just isn’t theirs.

Join our discussion about personal data.  Let us know what you think.

Changing the model of information management and protecting personal data is very important.

Protecting personal data cannot be accomplished if you give it to others.  Once it is shared it is not private.

We first need to realize there is another model, that supports the privacy of the individual and still allows society to function.

We need to define the problem and help build awareness of the issues and the alternatives.

We need to build a legal framework for a digital world that supports our beliefs, values and freedoms.

We need to develop laws that protect individuals personal data, privacy and property.

We need to re-tool the information management industry to honor and adhere to privacy laws and to develop their software applications in accordance with good privacy protection.

We need to have networks that support our information management digital world needs.  The current model is broken.  Access to information should not be metered, filtered, monitored, or restricted in any manner.  I call this open networking.  Network Neutrality is a framework for support the current model.

We need to gather our information into a single place that can be protected, supported and managed easily.  Each individual has his own information storage system and it only contains their information.  It serves a single individual.

We need to separate data and applications.  We need better data standards.  We need better applications. We need a new system for storing individual data.

We have to know that the world operates on information and we have to begin to understand the value of our information.  It is not free and should not be shared without our approval.  It is currency.  We need to value our information.

The individual’s freedom for the pursuit of happiness, for life and the expression of ourselves in our work, thoughts and deeds is dependent on having information that is reliable, truthful and accessible.   Without having control of your information your freedom is at risk.

Everyone needs internet access – Net Neutrality

26 Apr

“The internet is global”

[but the global governance of the internet is not recognized or well known or that functional]

“all media is moving to the internet”

[Government censorship or regulation is only available on regulated communications services.  Currently the internet is not under the jurisdiction of any government agency.]

These comments can be heard in this video from Bill Moyer’s Journal It is short and worth watching.

Everyone needs access to the internet.

It should be “free” <$20.00 /year for individuals but organizations and  Companies will have to pay.

The use of the internet is for access to our information and because “all media is moving to the internet” it will be the way we get our general news and information in the future if not already today.   When all of our personal information is online we will have to have open access to the internet as the means to survive.  It will be just like the air we breath.  We will have to have it.  Take it away and we will be unable to function.  It is very important and a necessary resource for our digital future.

Open letter to Aneesh Chopra

25 Apr

I attended the Connect 2009 conference in Washington D.C.  and felt a strong sense of commitment to the need for an electronic health record for all U.S. Citizens.  I don’t believe that the efforts behind the Connect software solution will be a solution.  Read this open Letter to Aneesh Chopra for my reasons.

If we don’t address the need for a personal database to keep our personal information we will have bigger problems soon.

As an early member of the Computer Based Patent Record Institute and a committee member I agreed with the findings of that organization.  We need a birth to death electronic medical record.  At some point in time, they gave up on this goal and decided to burden health care providers with the collecting, managing and securing of this data.  With no defined architecture and a lack of understanding about how to fix this problem we are ending up with multiple vendor solutions with no hope of a birth to death electronic medical record.  We have created islands of data.  Haystacks.

What we are planning with local, regional and national data collection nothing could be further from the solution that is needed.  We need a different information management solution for the electronic medical record.  The relational database will fail.  The problem is not a relational data management problem.  It is a personal data management problem.  It is about collecting individual data and storing it in the person’s individual database.

The solution exists.  It works with our current technologies.  Just don’t use a relational database.

Missouri Hospital Association Data Reporting Mandate

03 Apr

Since 1993 all Missouri hospitals have been required to report personal data on all hospital patients receiving care.  Data has been collected beginning in 1986 and Kansas and Missouri are jointly collecting data since 2000.   Reporting data is sent on CD’s (Compact Discs) monthly to member hospitals.  (I would guess without any security or encryption.)  That is a lot of CD’s.  I wonder if all of them are accounted for?  Have any been “thrown away”?

In a recent meeting in February 18, 2010 they have started to enforce rules about a 1% error threshold with the quality of data.  Here is a summary of the February 18 meeting.  I wonder if they have provided any historical data of provider error rates?

HIDI will provide an overview of the guidelines for data submission, including the collection, editing and correction of discharge data.

HIDI recently conduct regional meetings at MHA-member hospitals to review HIDI’s inpatient and outpatient discharge collection process. Staff provided an overview of the guidelines for data submission, including the collection, editing and correction of discharge data. Staff also provided an update on the required discharge data submission to the state.

In November, the Missouri Department of Health and Senior Services notified hospitals and ambulatory surgical centers of its intent to enforce the 1 percent field level error threshold for reporting patient abstract data included in 19 CSR 10-33.010. The rule, effective since Dec. 31, 1992, established procedures for state reporting of patient abstract data for inpatients and outpatients by hospitals and ASCs. HIDI processes and reports discharge data for most MHA-member hospitals and for HIDI-contracted ASCs. According to DHSS, enforcement of the 1 percent error threshold will begin with federal fiscal year 2010’s first quarter data submission — discharges between Oct. 1 and Dec. 31, 2009. Reporting organizations not able to meet the 1 percent error threshold must submit a corrective plan of action to DHSS.

The full report can be found here.

(click on this image to enlarge)

In addition to the personal data required the medical diagnosis, condition, procedure codes, charges, patient disposition, physicians and medical record number were provided.

This information is kept in it’s original form and can be used for other purposes if approved by the HIDI Data Release Advisory Committee appointed by the director.  Unique patient data can be used for detailed studies though subsequent release of data cannot identify patient, physician or provider.

In a letter dated November 18, 1992 from Kenneth L.  Kuebler, Executive Vice President of HIDI,  he provided a concern about this data collection process.

“7.              In addition, legal counsel has brought to our attention the fact that compliance with certain of your reporting requirements will place hospitals in violation of a federal patient confidentiality statute (I will provide the precise citation later when it is provided to me) that precludes the release of the identity of patients treated for drug or alcohol abuse.  The rules will need to reflect this restriction and exempt from the reporting requirements the name or social security number of patients discharged for these types of treament.”

I wonder if compliance to this Federal Patient confidentiality statute was monitored or enforced.  It would have fallen to the reporting hospitals and ambulatory surgery facilities.

HIDI provides many reports to…

The following data are available to MHA-member hospitals.

Hospital Inpatient Reports

These reports contain comprehensive information concerning hospital utilization patterns and patient characteristics and are valuable tools for hospital planning and evaluation. Available since 1986, the reports are mailed to member hospitals that provide inpatient discharge data. Beginning with the 2000 Hospital Inpatient Reports, inpatient discharge data for Missouri and Kansas are combined and reported at the hospital level. Participating Missouri hospitals may purchase reports for Kansas, and participating Kansas hospitals may purchase reports for Missouri. In 2003, the utilization rate tables for Missouri were added to the CD as a convenience to members. The tables report the 500 most frequent principal diagnoses, the 500 most frequent principal procedures and all diagnosis-related groups (DRG).

Interim Hospital Inpatient Reports

Hospital Outpatient Reports

Census Data

Management and Productivity Reports

Monthly Utilization Report

Do all states collect this type of data?

I searched through the 19 CSR 10-33.010. (The rule, effective since Dec. 31, 1992, established procedures for state reporting of patient abstract data for inpatients and outpatients by hospitals and ASCs.)  I did not find the word privacy.  I don’t know what privacy laws protect this data.