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(i) The department shall maintain a list of all authorized initial and subsequent users of data.
1. Persons who acquire data without the department’s permission shall forfeit all future access to department data under this chapter.
2. Persons inappropriately using data covered by this chapter shall be subject to penalties under ch. 153, Stats., and this chapter.
(k) The department may not sell or distribute databases of information from health care providers who are not hospitals or ambulatory surgery centers that are able to be linked with public use data files unless first approved by the independent review board.
(4)Custom reports.
(a) Custom-designed reports. The department may review and approve specific requests for custom-designed reports and do any of the following:
1. Release custom-designed reports, including those that identify individual health care providers, from the hospital and free-standing ambulatory surgery databases. If the department receives a request for release of data from a provider other than a hospital or freestanding ambulatory surgery center in the development of a custom-designed report, the department shall seek approval for the release of the data from the independent review board unless similar requests have been previously authorized by the IRB under sub. (2) (c) or unless the data are contained in the public use data file.
2. Release health care provider-specific risk-adjusted and unadjusted data from the hospital and freestanding ambulatory surgery center patient databases used to prepare custom reports as long as individual patients are not identifiable and when data review, verification and comment procedures have been followed under ss. DHS 120.12 (5) (d) and (6) (e) and 120.13 (4).
(b) Requesting custom datasets containing only public-use data elements.
1. Persons requesting custom datasets containing only public-use data from the department shall define the elements needed in the dataset.
a. The department shall determine whether it will comply with the request.
b. If the department approves the request, the requester shall either complete, sign and notarize a department data use agreement form or have a current signed and notarized department data use form filed with the department.
c. If the department denies the request, the department shall notify the requester in writing of the reason for the denial.
(c) Requesting datasets containing zip code information.
1. Persons requesting custom datasets containing zip code information shall work with the department to define the desired elements for the dataset.
2. Custom data requests may include zip code data from the physician office data collection only if the department has approval from the IRB to include zip code data and does any of the following:
a. Withholds other potentially identifying elements.
b. Determines that the dataset’s population density is sufficient to mask the identities of individual persons.
c. Groups other potentially identifying data elements to provide sufficient population density to protect the identities of individual persons.
d. Adds multiple years of data to protect the identities of individual persons.
a. If the department determines the request is reasonable, the department shall present the request to the IRB along with proposed remedies to assure confidentiality. If the IRB approves the request, the department may approve the request. The department may not release complete zip code data in the physician office data collection without IRB authorization.
b. If the department approves the request, the requester shall either complete, sign and notarize a department data use agreement form or have a current signed and notarized department data use form filed with the department.
c. If the department denies the request, the department shall notify the person making the request in writing of the reasons for the denial.
(d) Requesting datasets containing patient-identifiable elements.
1. Persons requesting datasets containing patient-identifiable elements shall do all of the following:
a. Work with the department to define the elements for the dataset.
b. Provide the department written statutory evidence that the requester is entitled to have access to the data.
c. Identify any statutes requiring the requester to uphold the patient confidentiality provisions specified in this subchapter or stricter patient confidentiality provisions than those specified in this subchapter. If these statutory requirements do not exist, the department shall require the requester to agree in writing to uphold the patient confidentiality provisions in this subchapter.
a. The department shall determine whether it will comply with the request.
b. If the department approves the request, the requester shall either complete, sign and notarize a department data use agreement form or have a current signed and notarized department data use form filed with the department.
c. If the department denies the request, the department shall notify the requester in writing of the reason for the denial.
(e) Requesting custom analyses.
1. The requester and the department shall determine the level of specificity of data elements to be provided in the department’s analysis.
Note: A major concern of the Department is to preserve patient data confidentiality. As the geographic unit of requested information becomes smaller, i.e., specific zip codes, it becomes harder to preserve patient privacy. Therefore, in those instances where persons request information disaggregated to the level of zip code and the population of patients in the zip code is small enough to identify individual persons, the Department will use the procedures in sub. (4) (c) 2. to preserve patient privacy.
a. The department shall determine whether it will comply with the request.
b. If the department approves the request, the requester shall either complete, sign and notarize a department data use agreement form or have a current signed and notarized department data use form filed with the department.
c. If the department denies the request, the department shall notify the requester in writing of the reason for the denial.
(5)Department charges for custom-designed reports and custom analyses of data.
(a) If, upon request, the department initiates preparation of custom-designed reports or custom analyses that are based on information collected by the department, the department shall charge fees, payable by the requester.
(b) The fees charged by the department under par. (a) shall be commensurate with the actual necessary and direct costs associated with the data collection, analyses, compilation and dissemination of the report or analyses. In calculating its costs, the department shall take into account all of the following:
1. Type of data.
2. Record count and computer time required.
3. Access fees for computer time.
4. Staff time expended to process the request.
5. Handling and shipping charges.
(c) Custom data requests that require IRB approval shall be paid in advance of the department’s processing of the request.
(6)Public use data file requests.
(a) In addition to the reports under ss. DHS 120.20 and 120.29, the department shall respond to requests by individuals, agencies of government and organizations in the private sector for public use data files, data to fulfill statutory mandates for epidemiological purposes or to minimize the duplicate collection of similar data elements, and information that identifies a physician. The board shall designate the manner in which the data for these requests shall be made available. The department shall charge persons requesting the data fees that are commensurate with the actual and necessary direct costs of producing the requested data.
(b) Excepting directories resulting from information reported under ss. DHS 120.13 (2) and (3) and 120.14, the department shall not identify specific patients, employers or health care providers who are individuals in any public use data file released by the department. Prior to the release of a public use data file, the department shall protect the identification of specific patients, employers and health care providers who are individuals by all necessary means, including the deletion of patient identifiers and the use of calculated variables and aggregate variables.
History: Cr. Register, December, 2000, No. 540, eff. 1-1-01; corrections in (4) (a) 2. made under s. 13.93 (2m) (b) 7., Stats., Register, June, 2001, No. 546; CR 01-051: am. (3) (c), Register September 2001 No. 549 eff. 10-1-01.
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Published under s. 35.93, Stats. Updated on the first day of each month. Entire code is always current. The Register date on each page is the date the chapter was last published.