Metasteward LLC
Looking at health information technology (HIT) through the "donut hole"!
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Looking at health information technology (HIT) through the "donut hole"! |
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Summary of Activities and Projects 2010 ************************************************************ December 24, 2010 Open Letter to BFMA (Business Forms Management Association) "Wisconsin's Rogue Forms, Rogue System and Rogue Department" Dear BFMA Colleagues, During the latter portion (from 1998 until 2005) of my over forty years of employment by the (then) Wisconsin Department of Health and Family Services (DHFS), I served as the Department's electronic forms (eForms) coordinator and represented DHFS as its in-house data consultant on workgroups of national and international standards development organizations (SDOs). After leaving DHFS, I continued pursuing my passion for health information technology (HIT) by serving as a volunteer in various capacities, representing myself (and others like me), as a consumer/patient advocate as well as a subject matter expert. I have served as a volunteer member on a number of subcommittees of the U.S. Health Information Technology Standards Panel (HITSP) including the Consumer Preferences Tiger Team (CP-TT) which reported directly to the Office of the National Coordinator (ONC). I currently am a member of the HL7 Personal Health Records (PHR) Workgroup. Since August 2007, I have been the volunteer data entry operator for the McFarland (Wisconsin) Senior Outreach Program. In January 2008, in my capacity as data entry operator for McFarland's outreach program, I encountered a rogue data entry form that the Department of Health Services (DHS) had adapted from instructional material originally developed in the late 1980's by the Nutrition Screening Initiative (NSI). Although the NSI form, known as "DETERMINE", was never envisioned to be computerized, DHS staff configured a set of "user fields" in its Social Assistance Management System (SAMS) database and mandated their use as an assessment tool to evaluate individuals' nutrition behavioral risk factors. In November 2008, DHS added a "privacy notice" to the form indicating that the information was being collected to comply with federal reporting requirements. Another set of DHS configured "user fields" is used to record chronic conditions of individuals participating in the "Living Well" chronic disease self-management program (CDSMP). The program originally developed by the Stanford University School of Medicine was initiated in Wisconsin in 2005. It is one of the most outstanding evidenced based prevention programs in the nation; but medical conditions should not be listed in the electronic SAMS records kept on individuals. On forms relating to CDSMP, DHS has included the same "privacy notice" as on the "DETERMINE" form. DHS staff members have configured nearly a hundred "user fields" including five labeled as: Diagnosis1, Diagnosis2, Diagnosis3, Diagnosis4 and Diagnosis5. The grouping is a particular pattern related to the multi-axial diagnostic system of the Diagnostic and Statistical Manual of Mental Disorders (DSM). I recognize those particular fields from my past participation in Wisconsin's Data Infrastructure Grant (DIG) project funded by the Center for Mental Health Services/Substance Abuse and Mental Health Services Administration (CMHS/SAMHSA). The DHS form: "F-11103 Outpatient Mental Health Assessment and Treatment/Recovery Plan" contains the same fields and possibly is the source of the data that populates those particular SAMS "user fields". There are seven built-in NAPIS (National Aging Program Information System) fields in the SAMS database that ostensibly are used by DHS for constructing reports to the federal Administration on Aging (AoA). The seven NAPIS fields have been parlayed by DHS into an illegal tracking system containing hundreds of non-NAPIS data elements for the illegal collection and storage of protected health information (PHI) belonging to over 150,000 of Wisconsin's elderly and disabled citizens. DHS has developed a rogue system that is being operated outside the rule of Wisconsin and federal law. When I volunteered in 2007 to enter health information of McFarland's seniors and disabled into the SAMS database, I believed that I would be entering data into a legitimate State of Wisconsin system. Over time I found that SAMS was not a legitimate State system. If it had been a legitimate system, DHS would have involved its forms and records officer, or one of the many other forms and records experts in the Department, in configuring SAMS forms. Harmony, the company that owns SAMS, would have monitored how Wisconsin was actually configuring the application and the systemic privacy and security breaches documented in the following files would not have occurred. At a fundamental ethical and moral level, if DHS had continued to follow "Standards of Fair Information Practices" as it once did, its systems would be worthy of trust; at this point in time, DHS as an agency itself is not worthy of trust. Because DHS administrators have engaged in self-deception, the entire nation-wide effort toward trustworthy health information exchange (HIE) has been compromised. That self-deception is ignominiously displayed when Susan Crowley, the DHS administrator responding on behalf of Governor Doyle, says to me: "If you wish to withdraw your record from the system, we would be happy to honor your request." The self-deception is further displayed in Donna McDowell's letter responding to concerns that I raised during meetings of the WIRED for Health Board and the Long Term Care Council about the security and privacy of the listing of medical conditions of individuals participating in the CSDMP program. Ms. McDowell is director of the Bureau of Aging and Disability Resources (BADR) which is Wisconsin's federally recognized state unit on aging (SUA). I've arranged the following documents in a sequence that shows my concerns and the process of self-deception followed by DHS. Because DHS utilized the privately owned websites of the SAMS database administrator: "http://dhfsbadr.org and http://dhfsbadr.com" and privately controlled list servers: "Badgeraginglist@yahoogroups.com and WisNutrition@yahoogroups.com" to transmit "DETERMINE" data entry instructions, documentation is not available on State owned and operated websites and list servers. Furthermore, because Harmony's suite of applications including SAMS and BEACON are operated by the Greater Wisconsin Agency on Aging Resources (GWAAR), there is no documentation (that I can locate) for either SAMS or BEACON on State operated websites. Wisconsin's plan for the development of a statewide network of electronic health information was approved earlier this week by federal officials. The Wisconsin Statewide Health Information Network (WISHIN) will serve as the network's governing organization and the Wisconsin Health Information Exchange (WHIE) will act as the network's technical manager. DHS, as an agency, is not worthy of the trust to participate in WISHIN nor in the nation-wide health information exchange networks. As a consumer/patient advocate having multiple chronic conditions (MCCs), portions of my virtual electronic healthcare record (EHR) are located in systems of various vendors, including both Epic (Verona, Wisconsin) and Harmony Information Systems (Reston, Virginia). I am deeply concerned about the inadequacy of DHS' plans for the privacy and security of both my records and the health care records of others like me. It was of no comfort to me for Susan Crowley, the DHS administrator, to offer to remove my record from SAMS. In fact, her offer to withdraw my record from SAMS was a source of great discomfort and prompts me to classify the Wisconsin Department of Health Services as a ROGUE DEPARTMENT! The Office of the National Coordinator (ONC) should review Wisconsin's state operating plan (SOP) for compliance with the ONC-HIE-PIN-001 directive for the HIT Coordinator to: "Ensure state program participation in planning and implementation activities including, but not limited to Medicaid, behavioral health, public health, and departments of aging." NutritionCheckListInstructions.pdf OpenRecordsRequest04212008.pdf BADRPrivacyStatement071508.pdf Sincerely, Fred Buhr Fred Buhr, MSSW Metasteward LLC ************************************************************ December 17, 2010 Email sent to Jean L. Lloyd, National Nutritionist, Administration on Aging ************************************************************ December 16, 2010 Comments entered on American Dietetics Association Blog: Hello Lindsey, As I looked through the comments on "PHRs and Non-Covered Entities" I saw your entry on behalf of the American Dietetic Association. You may recall back in August of this year, I commented on your Nutrition Informatics Blog that the privacy and security of the management information system utilized by Wisconsin in the administration of the Older Americans Act programs was the worst in the nation. The underlying cause is that the aging programs in Wisconsin operate in their own world under the assumption that because staff and administrators work hard and have the best of motivations, every administrative decision they make is the right one. The aging programs insulation from peer review and absence of oversight by any other administrative unit, has resulted in a total lack of understanding of nutrition informatics. Furthermore there is complete disregard of the privacy and security framework required by the Office of the National Coordinator (ONC) to assure trust of information sharing. In August 2010, I wrote a letter to Governor Jim Doyle requesting that he appoint a “special administrator” to take administrative control of the Bureau of Aging and Disability Resources (BADR) in the Department of Health Services (DHS). I sent the letter as hardcopy only to him, without copies to anyone else. I had hoped to go around BADR but was unsuccessful as our Governor requested that the administrator of the division where BADR is housed respond to me on his behalf. Susan Crowley, the administrator who answered my letter said, “If you wish to withdraw your record from the system, we would be happy to honor your request.” Her response validates my concern that the aging programs are not following state and federal law. Wisconsin has the strongest laws in the nation relating to records and her offer to withdraw my record from the Social Assistance Management System (SAMS), besides being an insult to me, is in violation of Wisconsin’s records laws. Because Wisconsin’s state government will not take my concerns seriously, I would like to raise the issues directly with the American Dietetic Association. Following are copies of original documents which I believe are evidence of bad practices – the worst of the worst bad practices in the nation. http://www.metasteward.net/NutritionCommitteeMinutes.pdf http://www.metasteward.net/BADR's%20Contract%20for%20SAMS.pdf http://www.metasteward.net/AmyRamsey012908.pdf http://www.metasteward.net/NutritionCheckListInstructions.pdf http://www.metasteward.net/BADRPrivacyStatement071508.pdf http://www.metasteward.net/NutritionCheckList.pdf http://www.metasteward.net/Crowley09202010.pdf Best regards, Fred Fred Buhr, MSSW Metasteward LLC ************************************************************ September 22, 2010 My response to Susan Crowley, Administrator telling her that she and the Department's security and IT staff do not understand my concerns and that I'll write another urgent letter to Governor Doyle. ************************************************************ September 21, 2010 Letter from Donna McDowell, Director of the Bureau of Aging & Disability Resources responding to concerns I raised during the WIRED for Health Board meeting (08202010) and the the Long Term Care Council meeting (09072010). ************************************************************ September 20, 2010 Response by Susan Crowley, Administrator of the Division of Long Term Care to my letter to Governor Doyle dated August 30, 2010 ************************************************************ September 10, 2010 Letter to the Editor The Capital Times ************************************************************ September 9, 2010 Letter to Dane County Board Chair McDonell - Relevant references in letter are: Copy of select pages from 2006 Study of State Agency Units' Information Systems ************************************************************ September 7, 2010 Comments to Wisconsin Council on Long Term Care ************************************************************ September 6, 2010 Email to Carolyn Merritt, VP Customer Care, Harmony Information Systems ************************************************************ August 30, 2010 Letter to Governor Doyle requesting that he (Governor Doyle) appoint a "special administrator" to immediately take administrative control of the Bureau of Aging and Disability Resources (BADR) in the Department of Health Services (DHS). In the final paragraph of my letter, I suggest that the Governor appoint Al Fish as the "special administrator". My suggestion was based upon my memory of Al as a policy and budget wonk in the Department of Administration (DOA) and at the Department of Health and Family Services (DHFS) some twenty or so years ago and reading of his leadership relating to "stimulus monies" and his recent experience with the primate labs and National Institutes of Health (NIH). I asked the question, "Is the Social Assistance Management System (SAMS) a Health Information Technology (HIT) an Engine for Medical Identity Theft?" in an email I sent in March 2009 to Dr. Robert Kolodner - who was at the time - National Coordinator for Health Information Technology, Gary Cantrell, Director of Computer Forensics and Investigative Research in the Office of the Inspector General and Pam Dixon of the World Privacy Forum. I believe that particular email went lost since I never received an acknowledgement from anyone. With the passage of time and health information exchange (HIE), the situation has become much more complicated than that which I described in 2009. ************************************************************ August 23, 2010 Email from Denise Webb, State Health IT Coordinator regarding my submitted comments relating to WIRED's draft strategic and operational plan (SOP). Finalized staff response to my submitted comments relating to WIRED's SOP. ************************************************************ August 20, 2010 Comments to WIRED Board during public comment period. ************************************************************ August 8, 2010 Comments entered on American Dietetics Association Blog: Hello Lindsey, My wife Shirley and I are in our early 70's, a little younger than your parents. I graduated from high school (Dubuque, Iowa) in 1956 and my wife graduated from Beloit Memorial High School (Beloit, Wisconsin) in 1957. Shirley was one of 10,300 Wisconsin Class of 1957 high school graduates, randomly selected, to participate in the Wisconsin Longitudinal Study (WLS) (http://www.wisls.info/). Periodic interviews with those students, their spouses and siblings have taken place over the past five - now going on six - decades. The WLS began as a project to help the state of Wisconsin prepare for the growing numbers of high school students seeking post-high-school education in the late 1950s. Since that time, the WLS has become one of the longest-running social science studies ever undertaken. In 2007, WLS participants were invited to contribute to the exciting research on the relationship between genes and health or other life outcomes by donating a saliva sample (via kit). The DNA in the saliva was analyzed to study the relationship of genes to health and well-being, including Alzheimer's disease, cancer, and depression. Last week an interviewer from the University of Wisconsin Survey Center came to our house and conducted an in-person interview of Shirley, including recording observations of several physical and mental activities she was asked to perform. The data will help scholars better understand the aging process. Toward the end of the interview, my wife was asked for permission (which she granted) to access her Medicare files in order to obtain information about the services she received that were paid by Medicare. Information will include: diagnoses, clinical encounters, procedures, and treatments. The interviewer described how the WLS protects the confidentiality of personal information. The interviewer further explained that the Federal Government has given the WLS a "Certificate of Confidentiality" that, among other privacy protections, provides that no one can require WLS to disclose any information about participants without their written consent. The Wisconsin Longitudinal Study is but one of Wisconsin's outstanding contributions that has earned the state a reputation for "leading the nation". I worked for the state of Wisconsin for over forty years and during all that time I believed that all Wisconsin's programs were outstanding and covered by strong privacy protections such as those of the WLS. But, since 2007, when I began a volunteer job as a data entry operator for our village's senior outreach program, I have found that the administrators of Wisconsin's state unit on aging (SUA) and area agencies on aging (AAA) have disregarded state and federal laws relating to privacy and security of protected health information (PHI). They have done so by inexplicably contracting for software as a service (SaaS) and utilizing an internet hosted network outside Wisconsin's firewalls and security framework. I believe that Wisconsin generally still has the best health and social services programs in the country, but in regard to privacy and security of the SaaS management information system utilized in the administration of the nutrition programs, I believe Wisconsin ranks as the worst in the country. Bad practices can clearly be seen in the process used by Wisconsin in mandating the use of the DETERMINE nutritional assessment form to show nutrition outcomes at the state and local levels. I have placed documents relating to the process on my website: http://www.metasteward.net/2010.htm I am a proponent of personal health records (PHRs) designed to exchange health information with electronic health records (EHRs) and am participating on the HL7 PHR workgroup. When PHRs become available, your mother won't have to write everything down from physician visits and (with her and your father's authorizations) you'll be able to see results of tests and clinical summaries of each of their office visits, first-hand. Lindsey, I have been following the various HIT committees and have heard you speak a number of times. If you haven't already done so, I would encourage you to apply for the Consumer e-Health Policy Analyst position in the Office of the National Coordinator (ONC). Best regards, Fred Buhr, MSSW Metasteward LLC Documents relevant to comments: January 29, 2008 - Mandate from Wisconsin's Nutrition Specialist February 5, 2008 - Instructions for entering DETERMINE data July 15, 2008 - FAQs relating to HIPAA privacy statement January 10, 2009 - DETERMINE modified with HIPAA notice February 2007 - September 2007 - Nutrition Committee Minutes June 4, 2001 - March 18, 2008 - SAMS software and services contract ************************************************************ August 6, 2010 Screen prints of survey submitted to Carolyn Merritt, VP Customer Care, Harmony Information Systems. ************************************************************ July 31, 2010 Comments submitted relating to the WIRED for Health Board's proposed (draft) strategic and operational plan for health information exchange. Although the draft plan is no longer available, I believe my comments are sufficiently detailed to be understandable in a free-standing format. ************************************************************ July 26, 2010 Clarification of letter of intent relating to health information exchange (HIE) state designated entity (SDE) ************************************************************ July 19, 2010 Letter of intent relating to health information exchange (HIE) state designated entity (SDE) ************************************************************ July 2, 2010 Open records requests (beginning in March 2010) to Francis Genter, Administrator, Dane County Adult Community Services Division ************************************************************ July 1, 2010 Copy of Metasteward LLC Website Message from Fred Buhr, MSSW ************************************************************ May 19, 2010 Acknowledgment of concerns from Dr. Seth Foldy *********************************************************** April 30, 2010 Thank you letter from Dr. Blumenthal to John Halamka and HITSP ********************************************************** March 27, 2010 Privacy and Security Complaint to the U.S. Office of Civil Rights (OCR) ********************************************************** January 28, 2010 Thank you from Consumer Preferences Tiger Team Co-Chairs ********************************************************** January 12, 2010 Testimony to Dane County Long Term Support Committee ********************************************************** January 11, 2010 Email to Shawn Doherty, Capitol Times Health Reporter ************************************************************ |
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Last modified: 01/01/11 |
