Broken Links in the Chain of Trust

Health information technology matters to consumers only if a chain of trust is established and if consumer preferences are honored. At this point in time I am skeptical as to whether either condition will ever be experienced. I say this because my experience as a consumer is that policies established at the high levels are never effectively passed down for implementation at the operational levels.

I'll explain and illustrate the disconnect between administrative and political rhetoric and the realities facing consumers concerning "broken links in the chain of trust" in subsequent entries to my blog. I'll consider "broken links of trust" from two perspectives, both having deadlines for responses of October 16, 2009.

The first being the Request for Information (RFI) Long-term Care Managed Care Infrastructure Project (http://tiny.cc/VTYal) issued by the the State of Wisconsin on August 17, 2009 with responses due by October 16, 2009 and the second being the Consumer Preferences Draft Requirements Document (http://tiny.cc/9Sk51) issued on October 5, 2009 with comments due by October 16, 2009.

Legacy Data and Electronic Health Records (EHRs)

I intended to raise the topic of patient consent to use legacy data housed in data warehouses or other programs during the comments portion of the HIT Policy meeting held on Friday, September 18th. Unfortunately, I must have been pushing the wrong buttons on my phone as the moderator couldn’t see any indication of persons wishing to comment by phone.

For many years, health information of seniors and disabled has been collected by state and local aging units and maintained in electronic records. The leading system, used by the majority of aging units is the Social Assistance Management System (SAMS). SAMS is the flagship application of Harmony Inc. and accessed through its proprietary portal: AgingNetwork.com.

Most states provide information concerning electronic information systems utilized for aging programs on their official Websites. New Mexico’s registration form for aging programs provides a typical example of health data that is included in individuals’ electronic records. New Mexico’s form contains person specific assessments related to behavioral risk factors, activities of daily living, instrumental activities of daily living, medications and drug allergies. New Mexico’s registration form can be seen at:
http://www.nmaging.state.nm.us/NewMAPIS/SAMS%202000_Registration-AssmenttFormFill_v1.1_04Dec08.doc

Since 2002, Wisconsin’s aging units have also utilized SAMS, but do so in ways unlike those of any other state. Copies of registration forms are not available on any official state or local governmental Website. For a considerable period of time, up until May 9, 2008, data entry instructions were available only on the personally owned Website of the SAMS administrator. Rather than state authorized group email services (as open records) for all contacts, Wisconsin’s State Unit on Aging (SUA) utilizes Yahoo!Groups to communicate with select persons in local aging units.

Typically, SAMS records are first opened on individuals who participate in congregate meal programs operated by senior centers or senior outreach programs. In order to minimize duplicate sets of records for the same individual, whenever a new record is initiated, the SAMS application automatically queries the whole Wisconsin data base for similar sounding names. All records returned, from locations throughout Wisconsin, are available for viewing without the access being recorded.

Unlike any other state, Wisconsin enters the health information of seniors and disabled in serial fashion. While individuals are told that the information they are being asked to provide is needed to comply with federal reporting requirements, they are not told that the electronic record being established will be used to track their future participation in programs and cannot be deleted. They are not told that Wisconsin has added “user fields” including five mental health diagnostic fields and a list of medical problems with information that can be added to a record without a person’s knowledge by someone at a later date.

The five diagnostic fields relate to the multi axial system of the Diagnostic and Statistical Manual of Mental Disorders (DSM). The DSM organizes each psychiatric diagnosis into five levels (axes) relating to different aspects of disorder or disability:

Axis I: clinical disorders, including major mental disorders, as well as developmental and learning disorders

Axis II: underlying pervasive or personality conditions, as well as mental retardation

Axis III: acute medical conditions and physical disorders

Axis IV: psychosocial and environment factors contributing to the disorder

Axis V: Global assessment of functioning or children's global assessment scale for children and teens under the age of 18

I've Been a Green All Along and Didn't Know It!

As I mentioned in my previous blog, I've joined the Four Lakes Chapter of the Green Party (4LGP). In order to symbolize my transition to becoming more politically active, I wore a T-shirt, to last Monday's 4LGP meeting, that I haven't worn since June of 1996.

The T-shirt has the logo of the Labor Party and the inscription, "History In The Making". It was the T-shirt that I wore at the founding convention of the Labor Party that was held in Cleveland, Ohio, in June of 1996.

While at the convention, I spoke with John Nichols. Recently I re-lived the convention when I re-read his article (which is now online) titled, Party hardly: Labor gets it together - sort of - Labor Party Founding Convention in Cleveland, OH, 1996. The article was originally published in the August, 1996 issue of The Progressive.

I recall the thunderous applause for Ralph Nader when he addressed the convention from the floor saying, "This is the birthplace convention of the new labor movement for the twentyfirst century--a movement to contain the wild excesses of corporations and to end their control over our politics, our culture, our very lives!"

In retrospect, Ralph Nader was wrong about the Labor Party being "a movement to contain the wild excesss of corporations and to end their control over our politics, our culture, our very lives!" The Labor Party was founded on moral principles and adopted a platform to live by, but never ran candidates for office.

I've been a a Green all along, but didn't know it!

Senior Centers Are Under Attack in Dane County

After limiting my activities, for years, to reasoned debate within the "system", I've decided to combine my reasoned approach with political activism. I recently joined the Four Lakes Green Party (4LGP) chapter of the U.S. Green Party in order to actively challenge the "system".

The Wisconsin Green Party is one of four recognized political parties in Wisconsin and stands for true social, economic, and environmental justice. The Green Party is attempting to build a democratic society in which human needs matter more than corporate profits.

Included among the commitments that the 4LGP stands for:

• A health care system that EVERYONE can access;

In my previous blog, I described the march and rally that I participated in on July 25, 2009 in support of "Health Care for All!" That was the start of my polictical activism to express my support of democratic principles.

Human needs matter more than corporate profits and matter more than Wisconsin's governmental agencies blindly supporting whatever administration, Democratic or Republican, that may be in power at any given point in time.

Dane County's system of Senior Centers provide services important to the health and wellbeing of seniors and disabled. The State of Wisconsin has mandated that Dane County move to "Family Care" and a system of Aging and Disability Resource Centers (ADRCs) in the future and remove funding for case managers. I've copied an article from the August edition of McFarland Area Senior News written by Ingrid Thompson, Director of McFarland's Senior Outreach Program explaining the attack:

INGRID'S INSIGHTS

"Each Citizen $1.57 for Every Senior".

In Dane County, there are 16 "Focal Points" (better known by some as "Senior Centers"). Each Focal Point has case managers (i.e. social workers) who assist seniors with applications to receive services or financial assistance, connect seniors with agencies or people who can help them with various concerns or issues, refer seniors who are abused to local authorities, check on the most frail and vulnerable seniors, among other things. Lori and Sara are our case managers. About half of their salaries are paid by county dollars.

As Dane County prepares its 2010 budget, we want to be sure the county supervisors keep the funding for all case managers (including Lori and Sara). It costs each Dane Co. resident $1.57 to maintain the county case management program. We think that is so little to pay for so much.

If you agree with us, we ask you to contact our supervisor, Patrick Miles at 838-6866 or Dane Co. Executive Kathleen Falk at 266-4114. Let them know how you feel. We'd appreciate your support!

---Ingrid

A complete copy of the McFarland Area Senior News can be found at:

http://tiny.cc/s1jad

Health Care For All March and Rally - July 25, 2009

The march and rally, with two dozen supporting organizations, speakers, and over a thousand marchers, was inspiring. You could feel the energy of the crowd, united in spirit, for “Healthcare for All!” The experience was uplifting.

I picked up the 4 Lakes Green Party(4LGP)banner and sign at Larry’s house around 1:00 p.m. After giving some consideration as to where I should park my car, I decided to park close to the Capitol and walk down State Street to Library Mall where the march was to start. In retrospect, after walking down and then marching back up State Street and climbing the long stairway to stand with my 4LGP sign behind the speaker’s podium, I wished that I would have chosen to park closer to the Library Mall. Parking closer to the starting point of the march would have given me a fresher start.

It was crowded on the mall but Jeff and I met without difficulty. The march was led by Mama Digdown's Brass Band and the Raging Grannies were ahead of us. Jeff was able to hold both ends of the banner himself and position it so it could be seen by State Street patrons on the sidewalks along the side of the street. Soon after we started marching, Jeff’s daughter, Kate, joined the march and from that point, she and Jeff carried the banner. I carried and waved both the 4LGP sign and a smaller “Health Care for All!” sign.

After we reached the steps to the Capitol, I saw Jeff and his daughter climb the left side of the stairway and position the 4LGP banner at the level above the speaker’s podium. I climbed the stairway on the right side and stood on the first step of the stairway directly behind the speaker’s podium waving the 4LGP sign and smaller sign as I had done during the march.

The rally was dedicated to Dr. Linda Farley who died on June 9, 2009, at the age of 80. A commemorative plaque was presented to her husband Dr. Gene Farley. Dr. Linda Farley was an ardent champion of a single-payer health care system run by the government as a public good rather than by for-profit insurers. She would have loved to have been a part of the rally and the “Healthcare for All” debate that is now taking place.

The first speaker was the moderator and, among other concerns, spoke about her husband’s small business which because of the economic down-turn could no longer afford the high cost of insurance for its employees.

A farmer told of his insurance policy with a $10,000 deductible that won’t cover an injury to his right arm because of a pre-existing condition. At one point, he motioned toward the Capitol and said that we couldn’t expect anything to come out of that building!

A woman from Sun Prairie said that fighting with United Health Care during her treatment for cancer was worse than having cancer! Payments for mammograms were caught up in the insurance company’s interpretation whether they were “diagnostic” or “preventive”: one category is covered, the other is not.

A clergyman from Sun Prairie told of calling his parents and finding that they each recently had ten teeth pulled. His father had worked for General Motors which was cutting their vision and dental coverage so they needed to get all of the work done before the insurance coverage was cancelled.

A physician from U.W. spoke of a patient, in his thirties, with diabetes, who could not afford test strips for his glucose meter. The doctor knew that without glucose test strips to help the patient keep his diabetes under control, that he (the doctor) would soon see him back at the hospital. As the physician predicted, the patient soon returned for urgent care.

Representative Tammy Baldwin received a resounding ovation and crowd affirmation of her support for single-payer. Tammy led the crowd in cheering for health care for all and encouraged the crowd to let their voices be heard all the way to Washington. She named members of the Wisconsin congressional delegation who were not supportive of a public option.

Senator Kohl, although invited, declined to attend and his stance on “Healthcare for All!” brought boos from the crowd.

Dr. Gene Farley closed the rally with his wife’s favorite chant: Everybody In, Nobody Out! … Everybody In, Nobody Out! … Everybody In, Nobody Out!

- Fred

Review of My Concerns Relating to the Social Assistance Management System (SAMS)

Before I review my concerns relating to the Social Assistance Management System (SAMS) I'd like to direct your attention to the McFarland Area Senior News for the month of June found at: http://tinyurl.com/nn4d8d

The June issue has many items of interest that will help us, as seniors, to prepare for situations that we might encounter in the future. The article, INGRID'S INSIGHTS, is of particular importance as it deals with preparing for situations when we can no long pay our bills because of a medical or mental condition. Most of us have our Wills and Power of Attorney for Health Care documents completed and updated. But one thing, that many of us overlook, is preparing for a situation where we can no longer pay our bills because of a medical or mental condition.

In the Insights article, Ingrid Thompson, who is Director of the McFarland Senior Outreach Program, describes a document called "Wisconsin Basic Power of Attorney for Finances and Property". This document is superior to other financial management options and should be considered in preparing for the future. As Ingrid says, "Life can change in an instant, and it's best to be ready for any possible situation. Having 'Plan B' in place and never using it is far better than having nothing at all."

I am reviewing my concerns at this point in time, as it appears that the Department of Health Services (DHS) and Dane County Area Agency on Aging will successfully prohibit any public discussion of issues relating to the Social Assistance Management System (SAMS). It's an unusual set of circumstances that finds me, as an Older American, simultaneously looking at that system from the perspectives of:

• Congregate Meals participant


• Volunteer Data Entry Operator for McFarland's Senior Outreach Program including the Congregate Meal Program and the Home Delivered Meal Program


• Volunteer member of the Health Information Standards Panel (HITSP) and its subcommittees including: Medication Terminology Harmonization, Information Interchange, and Security and Privacy, and


• President and CEO of Metasteward LLC, a member of the American National Standards Institute (ANSI)

January 29, 2008 -

In my capacity as a volunteer data entry operator, I received an email forwarded by (Ingrid Thompson) the Director of the Senior Outreach Program from the Nutrition Specialist mandating that effective March 1, 2008, the Social Assistance Management System (SAMS) be used to track client information from the new "Nutrition Screening Form" that all programs had been required to implement by January 1, 2008.

Data entry instructions were located at: http://dhfsbadr.org/docs/sams/nutritioncheck/. That Website appeared to me to be an official site of Department of Health and Family Services (DHFS) Bureau of Aging and Developmental Resources (BADR), but as I was to find out, was actually a site privately owned by the SAMS' system administrator. The intended use of the tracking system was to show nutrition "outcomes" at both the local and state levels.

January 31, 2008 -
I sent an email to the Nutrition Specialist and SAMS system administrator telling of the visceral reaction I experienced that the SAMS' tracking process violated my rights to privacy. I attached a DHFS form that followed proper protocol as to specifying the law underlying the form and the consequences that would follow if the form was not completed

February 18, 2008 -
I inadvertently gained access and control of the Web programs and host computers at Harmony Inc.’s data centers. Security holes had already been identified by the current systems administrator and–as I recently found–by a systems installer, as recorded in his service order notes, dated 3/24/2004. In a list of the top ten security flaws in Web programs, the security hole I inadvertently found is described as, “Broken access control – in which restrictions on authorized users are not enforced.” Cyber thieves are well aware of semantic technologies and crawl the Web looking for such vulnerabilities.

March through December 2008 -
During 2008, I assembled the following letters and documents which I anticipate will form the basis for a case study (that I hope to complete by January 2010) concerning repercussions of the failure of the federal Administration on Aging (AoA) to take the lead in defining a minimum data set (MDS) and in setting security requirements for Older American Act Programs. AoA’s failure has resulted in Wisconsin’s State Unit on Aging (SUA) and Dane County’s Area Agency on Aging (AAA) in configuring a software-as-a-service (SaaS) system in such a way as to systematically deprive the elderly and disabled of their constitutional rights to privacy. Both Wisconsin’s SUA and Dane County’s AAA are currently implementing an electronic record tracking system that ignores and violates both state and federal privacy laws.

Letter to: Rea Holmes, Executive Assistant, DHFS and Tonya Harmon, CEO, Harmony Inc.
Attachments:
1-ScreenShotsRemoteAccess.pdf
2-HolmesHarmonLetters.pdf
3-FairfaxCountyAudit2006.pdf
4-OpenRecordsRequest.pdf
Open Records:
5-Nutrition Committee Minutes.pdf
6-BADR’s Contract for the Social Assistance Management System (SAMS).pdf
7-Minutes of DHFS Data Stewardship Council.pdf
Other Records:
8-Report to HIPAA Metadata Registry Coalition.pdf
9- Comments to Area Agency on Aging Board - Legislative Committee – 11/12/2008
10-Comments to Health and Human Needs Committee – 11/18/2008
Attachment: HHN111808
Minutes of 11/18/2008 Meeting
11-Comments to HHN, HSB, LTS and AAA Boards – 12/02/2008
Attachment: Combined Boards 120208
12-Comments to Area Agency on Aging Board - Legislative Committee – 12/17/2008

(to be continued)

Semantic Interoperability - Part VI - As it Relates to Principles and Processes of Information Interchange

I am a member of the Information Interchange Subcommittee of the HITSP Foundations Committee and for the past several days have been reviewing two documents that will be discussed during our meeting on June 1, 2009.

The documents to be reviewed were developed by Norman Daoust [normandaoust@EARTHLINK.NET] which he described as follows:

(1) The Information Interchange Subcommittee Principles and Processes document. - adapted from a document produced by the Foundations Harmonization committee.

(2) The Interactions Patterns document. - summarizes the information interchange patterns identified in reviews of the information interchange standards published by Standard Development Organization (SDO) members of the U.S. Health Information Technology Standards Panel (HITSP) and identified in the Office of the National Coordinator for Health Information Technology's (ONC) Common Data Transport (CDT) Draft AHIC Extension/Gap document.

My comments that I plan to share are based upon my experience with "semantic interoperability" that I've described in my blog as "Semantic Interoperability - Parts I - V". My comments primarily relate to "Value set harmonization principles". In order to provide a context for my comments, I've copied particular portions of the "...Principles and Processes" document and added my comments in red following the copied sections.

Value set harmonization principles:

• Codes for a value set should be drawn from a standard reference terminology.


• HITSP Foundations reserves the right the add values into value sets prior to the code being added into the source code system. These would be contained in an interim US national code system (with the expectation that the interim codes are replaced once adopted by the source code system).


• Representation of NULL and OTHER will not be addressed on a per value set basis, but may be addressed as harmonization topics themselves.


• Extensibility (e.g. whether or not local codes can be included in an instance in addition to harmonized codes) is outside the scope of HITSP Foundations, and is a decision left to the SDO and the HITSP TCs.


• Dynamic vs. Static considerations (e.g., whether or not an instance can include codes from a value set that were added after the relevant specification was balloted) is outside the scope of HITSP Foundations, and is a decision left to the SDO and the HITSP TCs.[1]


• There will be a uniform policy for versioning harmonized artifacts, based on a predictable frequency. The frequency may vary depending on the artifact type.

Value set: A vocabulary domain that has been constrained to a particular realm and coding system.

• An ENUMERATED value set (aka an EXTENSIONAL value set) is one that is comprised of an explicit listing of the set of codes. Versioning occurs if values are added or deleted. SDOs typically have STATIC bindings to ENUMERATED value sets.


• A CRITERIA-BASED value set (aka an INTENSIONAL value set) is one that is defined by a computable expression that can be resolved to an exact list of codes (e.g. “all SNOMED CT concepts that are descendants of the SNOMED CT concept Diabetes Mellitus”). Versioning occurs if the criteria changes. SDOs typically have DYNAMIC bindings to CRITERIA-BASED value sets.

Comments: Twelve, or so, years ago, I worked in the Center for Health Statistics (CHS) in Wisconsin's Department of Health and Family Services (DHFS). My position identified as: "Linked Database Analyst" was funded through a grant from the Robert Wood Johnson Foundation. The objective of my position was to link data sets and then develop anonymized data sets for public use.

At the time, data sets were primarily located on a mainframe computer and were in a variety of formats, some in relational databases while others were in flat files. Because there was no unique person identifier used in the agency, it was necessary to use a variety of matching techniques. While I was familiar with various matching techniques, I gained expertise in the subject by participating in tutorials conducted by the world's leading experts in record linkage.

In 1997, I attended the International Record Linkage Workshop in Arlington , VA, and participated in several workshops but most notably those conducted by Martha Fair of Statistics Canada and William Winkler of the U.S. Census Bureau. The proceedings were sponsored and then published in 1999, by The Committee on Applied and Theoretical Statistics, National Research Council; Federal Committee on Statistical Methodology, Office of Management and Budget. Tutorials on probabilistic linking, not only provided me with insight on how to utilize various bits of information, from disparate sources, to link records of specific persons but with an appreciation of how difficult it is (probably impossible) to truly anonymize records.

The Center for Health Statistics (CHS) was a "SAS (Statistical and Analysis System)" shop. SAS is a system that allows one to bring together data from nearly any imaginable source. Data residing on a mainframe or PC, in flat files or as a part of relational databases can be brought together in SAS datasets and be analyzed in an almost unimaginable ways. SAS has a "data step language" and a SQL language implemented as Proc SQL which allows linking of up to 16 tables in one query. SAS also has an XML engine.

In 1996, Bertrand Russell's book, "The Principles of Mathematics" (originally published in 1903) was reissued in paperback. Part I of the book, which is the first 106 pages, sets forth Russell's landmark thesis that mathematics and logic are identical and that symbolic logic "investigates the general rules by which inferences are made". Russell describes a calculus of propositions, a calculus of classes, and a calculus of relations and an Algebra of symbolic logic which can be visualized by utilizing Venn diagrams.

For discussion purposes, a HITSP Information Interchange Calculus might be described as follows:

5.9 HITSP Information Interchange Calculus

• Element set: A collection of numbers, objects, or anything that can be conceptualized. Elements can include both Extensional and Intensional value sets. An empty set is called a Null Set and is a subset of every Other set.
• Information Interchange sets: Combining Information Interchange sets is called a Union of the sets. If the elements that are common to two or more sets are placed into a new set, that set is called an Intersection of the Information Interchange sets.
• Venn diagrams can be used to represent Information Interchange sets and their Intersection with other sets.

(to be continued)

Semantic Interoperability - Part V

Semantic interoperability often relates to linking files based upon probabilistic matching of files. Matching files has a long history of uses and with the advances in technology, it has become technically practical to follow the health experience and mortality of large populations who are thought to be as some special risk by linking existing health and death records for individuals across multiple databases. The mayor categories of record linking are "deterministic" or "exact" matching and "probabilistic". Generally, such linkages must be probabilistic if the are to be reasonably complete.

In his "Handbook of Record Linkage published in 1959, Howard B. Newcomb, Ph.D. defines linkage as: "Record linkage is the joining of information from two records that are believed to relate to the same individual, family, event, business or address (geo-coding). The slides below depict two basic record sets that were matched through iterative processing on birth weight, data of birth, hospital, zip code and county. An approximate match of 95% was realized at the first stage while the remainder were probabilistically matched. The resulting data set was constructed for public use.

(to be continued)

Semantic Interoperability - Part IV

In a study of de-duplication of birth records, I utilized "name and birthdate" as unique identifiers.

In a companion study of new born screening records, because of the absence of first names from many of the records, it was necessary to recommend a revised process as described below:

(to be continued)

Semantic Interoperability - Part III

Following are several paragraphs taken from a paper I wrote in 1999 relating to my study of names and birthdates as unique identifiers. The idea of the tool depicted above is to be able to develop data sets by "visually" creating Venn diagrams. The SQL programming would be transparent to users.

Structured Query Language (SQL) and Relational Database Theory
Relational theory was originally developed by E. F. Codd, an International Business Machines( IBM) researcher, and was first implemented at IBM in a prototype product called System R It was developed in the early 1970s as a way to provide computer users with a standardized method for selecting data from various database formats. The intent was to build a language that was not based on any existing programming language, but which could be used within any programming language as a way to update and query information in databases. The Structured Query Language (SQL) is now in the public domain and is part of many vendors’ products.

Definition of Algorithm
While this study was carried out using the latest computer technology, the principles being followed have been refined over the past 500 years. For example, the definition of an algorithm, as a formula for solving a problem, dates back. to a Persian mathematician in the mid 1400s. By the ear1y 1700s, the original Arabic word had mutated into the Latin word algorithmus and was used by Leibniz (1646-1716), one of the inventors of calculus, to mean “ways of calculation”. Conceptualization of the mathematical principles (of set theory ) that underlies SQL, dates to the 1800s.

Symbolic Logic
George Boole (1815-1864) discovered the branch of mathematics known as symbolic logic. Boole’s “algebra of logic” uses formulas to symbolize logical relations. The formulas in algebraic symbols can describe the general relationships among groups of things that have certain properties. Given a question about how one group relates to another, Boolean logic allows us to could quickly manipulate the equations and produce an answer. First, Boole’s algebra classifies things and then the algebraic symbols express any relationship among the things that have been classified. The Boolean datatype is named after this mathematician. Heim, in his essay says, “Boolean logic functions as a metaphor for the computer age, since it shows how we typically interrogate the world of information.”

Venn Diagrams
The term symbolic logic first appeared in 1881 in a book by that title. The book’s author, John Venn introduced the first graphic display of Boole’s formulas. The visual display that John Venn drafted begins with empty circles. Venn noted how Boolean logic treats terms, strictly as algebraic variables and not as universal terms referring to actually existing things. That concept is somewhat analogous to the way names coupled with birth dates are treated as abstract templates for clients to be instantiated. Boole’s logic can use terms that apply to empty sets, with no actually existing members. Our modern logical point of view begins with the system rather than with the concrete, existential and unique individual thing (or person).

Referent Dataset
The referent file should be constructed so as to facilitate the use of an iterative matching algorithm, programmed in SQL (Structured Query Language). Use of the referent file will always be limited to returning rows of information.. A complete row of information that exactly matches the name and birth date being entered may be returned from the referrent file. If not exactly matched, near matches of names and birth dates (and at the user’s discretion associated rows of information) may be returned to the calling program. The referent file will be constructed so as to be return (appropriate and correct) answers at maximum speed.

(to be continued)

Semantic Interoperability - Part II

Bertram Russell set forth his landmark thesis that mathematics and logic are identical in his book: The Pinciples of Mathematics (1903 reissued 1996). Russell said that symbolic logic is the study of various general types of deductions. The word symbolic indicates that mathematical symbols can be utilized. Russell said that the subject of Symbolic Logic consists of three parts, the calculus of propositions, the calculus of classes, and the calculus of relations.

In his explanation of the calculus of classes, Russell indicated that symbolic logic has as its "lair" the intermediate positions between pure extension and pure intension. Ten years ago, in my work related to the 1999 version of the United States Health Information Knowledgebase (USHIK) I began developing a "visual calculus" using Venn diagrams as a computational metaphor for examining mixed sets (containing any type of object or entity) in the intermediate region between pure extension and pure intension.

The work of the various HITSP Committees and this moment in history has re-newed my interest in theoretical work relating to the USHIK. The HITSP Foundations Committee's paper on Harmonization Principles and Processes defines value sets (on page 12) as follows:

My next blog will be: Semantic Interoperability - Part III and will relate to Venn diagrams.

(to be continued)

Semantic Interoperability - Part I

I've attached a link to Brian Ahier's blog and the transcript of the HIT Standards Committee meeting held on May 15, 2009. I found the meeting to be most exciting as I could feel the energy of the group amplified by the folks actually in the room, over the phone. John Halamka is simply amazing!

Brian, I appreciate you making the transcript available and plan to refer to it through out the week as I explain my views of semantic interoperability on both human and machine levels. But first, I'll talk about the technologies I use and my work space.
I mostly utilize a Toshiba tablet PC which allows me to dictate, write with a stylus, or use a keyboard for entry. My printer is an HP combination scanner, fax and printer. The USB hub that I use was given as a gift when I visited a new Team (tier 3) data center located in Fitchburg, Wisconsin, about ten miles from where I live.


I enjoy beta testing and several years ago, I tested the Microsoft software development kit (SDK) for tablet PCs which were under development. At the time, I used a Wacom tablet attached to a full size PC.

I am a registered member of Microsofts Partner Program and subscribe to the Microsoft Action Pack Toolkit. I've beta tested many Microsoft applications and enjoy programming as a recreational activity. As time permits, I am looking at Microsoft's Health Vault pre-production environment.

In order to test the many applications and operating systems that I have access to, I utilize "virtual environments". At the current time, since I am focused on HIT, I have deferred recreational programming and testing. The following picture is of the Virtual PC wizard.


To the left of my tablet PC is a dark blue covered book: The Priniciples of Mathematics by Bertrand Russell. The book was published in 1903 and reissued in paperback in 1996.

In Part I (the first 100 pages) Russell sets forth his landmark thesis that mathematics and logic are identical and explains Symbolic Logic as explication of Boole's Laws of Thought (1854).

(to be continued)

I Just Volunteered to be a "Real Life Use Case"

During the public comment period at the end of today's HIT Standards Committee meeting (held in Washington) which I attended by phone, I volunteered to be a "real life use case". My volunteering followed my comments concerning the importance of semantic interoperability, both at the human level as well as at the machine level (computer to computer).

Ten years ago, as the Data Administrator/Consultant for the Center for Uniformity, Security and Privacy (CUSP) in the (then) Department of Health and Family Services (DHFS) I participated as a beta tester for a distributable metadata registry called MetaPro sponsored by the (then) Health Care Financing Administration (HCFA) and Environmental Protection Agency (EPA). At the time I was also the representative from DHFS to Health Level 7 (HL7).

In anticipation of what I thought would be an opportunity, but never visualizing the "amazing opportunity of an alignment that has never occured in history" I joined the American National Standards Institute (ANSI) in January, in order to participate in developing standards that will personally benefit me and many others, who are, or will be senior citizens. I already had been participating via Webex in meetings of the Health Information Technology Standards Panel (HITSP) which didn't require being an ANSI member, but given my mission, I joined in order to have a "seat at the table" in discussion of any or all standards affecting senior citizens.

My company's name is Metasteward LLC and has the following mission statement:

Metasteward LLC's mission is to be recognized as the organization of choice for consultation on defining and recommending consumer empowerment and protection standards for senior citizens.

I hope my past life experiences in all areas, as well as my current experiences in trying to make sense of and navigate all the electronic and manual systems (both beneficial and harmful) that confront me on a daily basis will cause me to be selected as a volunteer "use case". I'd also like to mention that I do not have a day job.

Back Up to April 2009 McFarland Area Senior News

Since I've learned how to make "Tiny URLs" that provide easy access to Internet files that otherwise would take a number of clicks to open, I would like to back up to the McFarland Area Senior News for April 2009. Page 5 is an events calendar for the month with several dates and events (some noted and others not) that I would particularly like to point out.

April 3, 2009 - McFarland Senior Outreach Program has nutrition sites in both McFarland and Cambridge, Wisconsin. I enter data into the Social Assistance Management System (SAMS) for participants in both communities. On Friday, April 3rd, I traveled to Cambridge to both participate in the noon meal and to testify at a public hearing on Wisconsin's 2009-2011 State budget. Both events were held in the Amundson Community Center.

Wisconsin is in the process of developing its next biennial budget and the Joint Finance Committee of the Wisconsin Legislature held a public hearing in a large room adjacent to the room in which the congregate meal was served. The public hearing was very crowded, and although I had arrived early, I would have had to wait until evening to testify. In lieu of testifying in person, I submitted a written copy of my testimony and came home after the noon meal.

In my testimony, I said that through the years, politics has weakened human services by splitting the once overarching umbrella agency that was the Department of Health and Social Services into a multitude of state level agencies. I said that I believed it was time for the Legislature to reorganize state government to meet modern challenges and re-establish citizen boards to oversee agencies.

Because I believe that the State Aging Unit and Dane County are violating the privacy and security of my personal health information and that of other seniors, I said that I intend to file a verified complaint with the Attorney General of Wisconsin requesting that he bring a civil action in federal court on behalf of the citizens of Wisconsin to enjoin Dane County and the State of Wisconsin from continuing to use the Social Assistance Management System (SAMS).

April 16, 2009 - This day had been designated as National Healthcare Decisions Day (NHDD). An article on page 3 explains the tools, such as the Power of Attorney for Health Care that the Senior Outreach Program makes available in accordance with Wisconsin state laws.

April 29, 2009 - Maren Solberg, Attorney for the Coalition of Wisconsin Aging Groups (CWAG) presented a program and provided handouts on "Popular Scams and How to Avoid Them" and information on how to: "Take Action Against Identity Theft". One service that I had not been aware of is at the Web site: http://www.propertyfraudalert.com/ which provides a service (currently only available in Dane, Milwaukee, St. Croix and Winnebago Counties) that alerts you if someone is filing a fraudulent document with a register of deeds office. According to the FBI, property and mortgage fraud is the fastest growing white-collar crime. It can be as simple as someone recording a fraudulent document making it look like they now own your home or property.

Older Americans Month and "Tiny URLs"

I am a volunteer data entry operator for the McFarland (Wisconsin) Senior Outreach Program.

In my first blog, May 1, 2009, I quoted an article written by our Director, Ingrid Thompson about Older Americans Month and the national theme, "Living Today for a Better Tomorrow."

At the time I wrote the blog, I tried to create a link to the McFarland Area Senior News (where the article appears on page 6) but was unable to do so. Since then - in fact only yesterday - I found that I can create a "Tiny URL" that enables access to the newsletter by a single click. The "Tiny URL" for the May edition of the newsletter is: http://tiny.cc/1enIH

The newsletter in its entirety provides a glimpse, not only into the everyday lives of older adults but more broadly into the life of McFarland, as a community. The newsletter mentions a "Sing Along With 6th Graders" (also on page 6) with a rehearsal scheduled on May 29th and a short program scheduled for June 3rd (after the noon congregate meal).

The screen print below shows how to create a "Tiny URL":

The United States Health Information System (USHIK) - Then, Now and for the Future

Yesterday I attended two meetings: HIT Policy and Medication Terminology.I plan to attend the the HITSP Harmonization Subcommittee meeting tomorrow and the Health IT Standards Committee meeting on Friday. After the Policy meeting, I emailed two comments that I would like to explain in more detail.

But first, by way of background, I live in McFarland, Wisconsin, just outside of Madison. Epic Systems is located in Verona, Wisconsin, about twenty miles from where I live. My physician is associated with a University of Wisconsin Health Clinic located in McFarland. My hospital of choice is Meriter Hospital located in Madison. Both UW Health and Meriter Hospital have installed Epic's system.

My first comment was that "meaningful use" should include patient education/training on how to use Health Information Technology(HIT). Considerable discussion was held during the meeting concerning workforce education on how to use HIT but I don't believe anyone mentioned patient education. During a visit a month or so ago, accompanying my wife, to another UW Health Center, there was a small sign by the reception desk saying that staff were learning a new system. From the standpoint of patients, a brochure explaining the new system and its benefits would have been welcome and helpful.

My second comment was that from a patient's point of view the definition of "meaningful use" should be "crisp, clear and understandable". My comment paralleled Judith Faulkner's comment that "meaningful use" requirements should be "crisp, clear and doable".

The proposed requirements should be stated in unambiguous terms so that judgments can be made before adoption, not only whether they are desirable, but also whether they are programmable. From a patient’s point of view, I want to be able to understand the security that is actually built into the system in response to understandable requirements.

Ten years ago, in preparation for the Wisconsin Department of Health and Family Services (DHFS) to implement HIPAA, I participated in the HIPAA Metadata Registry Coalition sponsored by the (then) Health Care Financing Administration (HCFA) and the Environmental Protection Agency (EPA). I was a beta tester/registrar for a distributable metadata registry based on ANSI X3.285-1998 Metamodel for the Management of Shareable Data and ISO/IEC 11179 Specification and Standardization of Data Elements.

DHFS’ effort in establishing a metadata registry paralleled the national effort of the United States Health Information Knowledgebase (USHIK) and was intended to facilitate data exchange relationships and agreements between DHFS and many federal agencies. USHIK at that point was located on a military Web site that after 9/11 was closed to other than federally authorized users. USHIK over the years was moved from site to site and finally found a home with AHRQ.

Security and Privacy are Foundational to "Meaningful Use"

Today (Monday May 11, 2009), I attended two meetings. The first was the HIT Policy Committee that ran from 7:30 a.m. - 10:15 a.m. (CST). The second was the Medication Terminology Harmonization Project , that ran from 1:00 p.m. - 2:00 p.m. (CST).

Shortly after I connected with the HIT Policy site, the application ran into a problem and was forced to close, so I continued on audio only.

Clearly the committee viewed privacy and security as foundational concepts. One of the committee members said that individuals worried about, "Who's going to get my record."

Judith Faulkner of Epic said that from the vendors' standpoint the privacy and security "meaningful use" requirements should be: "crisp, clear and doable."

After the call ended, I sent an email with the comment that from a patient's standpoint the definition of "meaningful use" should be: "crisp, clear and understandable".

Recently I reviewed the Webcast of the March 13, 2009, meeting of Wisconsin's eHealth Care Quality and Safety Board.

During a discussion of the future role of the Board, several committee members expressed the opinion that the future role of the Board be broader than just"Health Information Exchange (HIE)". The representative from Epic was particularly emphatic in presenting the view that components of individuals medical records are enmeshed in other components and looking only at HIE is much too restrictive.

Clearly, security and privacy from a patient-centric view are foundational to the Health IT Policy Committee's efforts to improve health care in the US. Hopefully, the Department of Health Services (DHS) will allow Wisconsin's eHealth Board to take a broader view of health IT and consider the role that "patient ownership" of health care records plays in improving the health of Wisconsin's citizens.

Comparing Two Similar Questions from the Dental Medical History and the Nutrition Risk Checklist

The two questions that I'll compare are -

• Question 37 from the Dental Medical History form which asks:
  

and

• Question QI04 from the "DETERMINE" Nutrition Checklist which reads:

While I somewhat understand why my dentist asks whether I regularly consume more than one or two alcoholic beverages a day in the context of other medications or substances I might routinely take, I do not understand why the Dane County (Wisconsin) Area Agency on Aging asks me the question and stores my answer in my personally identifiable electronic health record that the State Bureau on Aging and Disability Resources (BADR) maintains.

At the bottom of the form, Dane County says:

For many years, up until January 2008, Dane County used the "DETERMINE" form mainly as an educational tool and while recording a total score did not store specific answers in a person's electronic record. While the practice of maintaining personal health information in an electronic database that was unknown to the vast majority of participants in the congregate meal program (was in my opinion) in violation of state and federal privacy laws, recording specific answers to questions that participants believed were self scoring lists that they could share with a professional health care provider was an even greater egregious violation of individuals' privacy rights.

The expectation of privacy is still conveyed by Dane County on their Web site as no indication is given that registering for participation at a congregate meal site will generate an electronic health record and that specific answers will be recorded. Participants in the congregate meal program are not told that their nutritional health is being assessed and reassessed on an annual basis without their informed consent. The practice by Dane County is the worst that I have ever encountered.

Comparing Two Forms - Dental and Nutrition Assessment

In my previous blog I mentioned two forms that I'll explore in more detail.

The first, a dental medical history form (that I scanned) is one of several paper based forms available to dentists in Wisconsin through the Wisconsin Dental Association. I very willingly complete this form because I want my dentist and my dental hygienist to be fully aware of my medical history.


The second form, commonly referred to as "DETERMINE", is used to assess nutritional risks of older Americans who participate in the Congregate Meals Program funded by the Administration on Aging (AoA). The assessment process, in Wisconsin, utilizes information stored in twenty five (Wisconsin defined data fields) in electronic records stored in data centers located outside Wisconsin.

While I very willingly complete the dental medical history, it is only with a great deal of reluctance that I complete the nutritional risk form. For nearly a year and half, I have raised my concerns with local, state, and federal agencies as well as with the vendor corporation that my privacy rights (and those of other older Americans) have been systemically violated by the process. I have also documented, on my Web site, that the Social Assistance Management System (SAMS) has obvious security vulnerabilities.

I believe that my concerns have been dismissed based upon false assumptions regarding my motivation in identifying the problems. The HIPAA Privacy Officer has told Wisconsin's chief security officer to disregard my concerns by saying: "... Repeated claims to that effect can only serve to falsely alarm senior citizens and should be vigorously denied." Staff in DHS have followed the privacy officer's advice and consistently vigorously deny my assertions that problems exist and that a risk assessment should be conducted.

Two Forms - Dental Medical History and Nutrition Check List

In my last blog, I mentioned several systems that contain portions of my electronic health record. I am linking to two blank forms that I have recently been asked to complete -

• Dental - Medical History
• Social Assistance Management System (SAMS) - Nutrtition Check List

In following blogs, I plan to compare these forms in terms of the information requested and the benefits that I (expect to) receive as a result of completing the forms.

Looking at E-Health IT from the Bottom of the Paradigm

My current e-Health record as an e-Older American is not found in a single location but rather parts of it are enmeshed in many systems. Some of these systems are intentionally connected while others are unintentionally connected. At any rate, I look at the systems from the perspective of comparing the information that I provide (either answers to questions or lab results) with the information (or benefits) that I in turn receive.


Systems containing my personal health information include:

• Epic - my primary physician is a University of Wisconsin family practitioner


• Epic - the system used by Meriter Hospital (my choice if needed)


• Medco - the payer for my prescriptions through Wisconsin Physicians Service (WPS) and Walgreens Pharmacy


• Medicare


• WPS Supplemental Insurance


• Dental Health Associates (new system which I believe might be Epic)


• Social Assistance Management System (SAMS) -for which I am the volunteer data entry operator for the McFarland Senior Outreach Program

It is the last system, SAMS that concerns me. Since August 2007, I have volunteered to be the data entry operator for the McFarland (Wisconsin) Senior Outreach Program. During my tenure as a volunteer, I have observed, documented, and reported to the Wisconsin Department of Health Services (DHS), the Wisconsin Department of Administration (DOA), the Wisconsin State Unit on Aging (SUA), the Dane County Area Agency on Aging (AAA), the federal Administration on Aging (AoA) and Harmony Inc. (the vendor) that the Social Assistance Management System has potential systemic privacy and security vulnerabilities.

Living Today for a Better Tomorrow

The following article was written by Ingrid Thompson, Director of the McFarland (Wisconsin) Senior Outreach Program where I have been the volunteer data entry operator since August of 2007. I copied it from May's edition of the McFarland Area Senior News newsletter as my opening post since it coincides with my personal mission to participate in providing e-tools that will enable me and other older adults to make informed decisions about our health care.

MAY - OLDER AMERICANS MONTH
This year's theme for Older Americans Month is "Living Today for a Better Tomorrow." As a nation, we must work together to give older adults the tools they need to make healthy decisions. Although the risk of disease increases with advancing age, poor health is not an inevitable consequence of aging. In fact, many illnesses are preventable. Nearly 40% of deaths in the US can be attributed to poor health habits, such as lack of physical exercise, poor eating habits and smoking.
Programs such as the Outreach Department provides or supports, like physical activity (yoga, walking, bocce), presentations on health issues; good nutrition and socialization (meal site and home delivered meals); mental health activities (bridge, mah jonng, cards, bingo, computer classes) reduces participants' early adminission to a facility. Studies have also shown that volunteering has a strong positive effect on older adults. Older volunteers have a greater life satisfaction, lower rates of depression and lower mortality rates, along with improved mental health.
We celebrate older Americans especially in May, and strive to work with you and for you to enhance your lives. Our mission is to keep seniors as independent, healthy and as safe as possible in their own homes. We consider ourselves privileged to be your partners in this venture.

This is the transition point for e-Health for all Americans as each person will have a certified health record by 2014. Many Americans, older as well as younger, express concern about the security and privacy of the future electronic health records. My personal belief is that the future will bring much more security and privacy for health records than that which currently exists.