The Childhood Diabetes Database has been established to try to better understand the impact of diabetes on children in Oregon. Although it appears that the number of children in Oregon with diabetes is growing, we have had no way to document this for sure. Both schools and practitioners will be reporting cases of type 1 and type 2 diabetes occurring in children aged 18 or younger to the database. The data collected about the prevalence and incidence of diabetes occurring in the pediatric population may also be used to assist in making decisions about the allocation of public resources. Once a child is in the database, the Diabetes Program will contact the family directly and offer them the option to be contacted about research opportunities that arise.
If you have questions or need more information, please contact the Childhood Diabetes Database staff.
Public Health Division – Dept. of Human Services
800 NE Oregon St., Ste. 730
Chlildhood Diabetes Procedure Manual for Schools (pdf)
School brochure with translations
Informational brochure - English (pdf)
Translations
Frequently asked questions with translations
What is the Childhood Diabetes Database, and how did it get started?
In 2001, the state legislature passed a law requiring the Oregon Public Health Division to establish a system to learn how many children in Oregon are affected by diabetes.
What is the purpose of the Childhood Diabetes Database?
The database was established so that we can better understand the impact of diabetes on children in Oregon. It appears that the number of kids in Oregon with diabetes is growing, but, until now, there has been no way to know this for sure. Information from the database may also help improve diabetes care. It may even help recognize things that increase children’s risk for diabetes, perhaps even helping to prevent much of it.
Why should I give my consent?
There are two important reasons:
First, the database will only give an accurate picture of the impact of diabetes among children in Oregon if the information that it contains is complete. For the database to be effective in addressing the needs of children with diabetes, your help is very important. Doctors and nurse practitioners are required by law to report to the database. Schools are also required to report, but they can do so only if a parent gives permission.
Second, you may have the opportunity to participate in research that may be beneficial to your child. Once your child is in the database, the Oregon Diabetes Program will contact you directly, to offer you the option to hear about research opportunities that arise. Any participation in research is completely voluntary, and you can rescind your permission to be contacted about these research opportunities at any time by contacting the Oregon Diabetes Program at the address or phone number above.
Is there any risk to sharing this information?
The main risk is the possible illegal access to database records by someone without authorization, with whom you wouldn’t want to share information (e.g., an insurance company). To prevent unauthorized access to the database, it is maintained on a secure computer at the Oregon Public Health Division, which includes the Oregon Diabetes Program. The information contained in the database is granted legal protection under Oregon law, and cannot be accessed even by court subpoena. Information from the database will be shared with others only in aggregate form (e.g., in the form of childhood diabetes incidence and prevalence rates). Patient contact information will be released to researchers ONLY if parents give their permission when contacted by the Oregon Diabetes Program.
What is the school's role in this process?
We recognize that school nurses play an important role in developing plans at school to insure that your child's health needs are being met in a safe and appropriate manner. We need their help in making sure that reporting to the database is accurate. The school nurse’s role is to ask you if you want to have your child's information included in the database, and to answer questions about that process. If you have further questions about the database and how it operates, please contact the Oregon Diabetes Program at the address or phone number above.
Schools FAQ - English (pdf)
Translations
School Reporting form with translations
School Reporting Form - English (pdf)
School Reporting Form - English (doc)
Translations
3. Information for Health Practitioners
Frequently asked questions
What is it and when did it get started?
In 2001, the state legislature passed a law (ORS 444.300) requiring the Oregon State Public Health Division to establish a system to learn how many children in Oregon aged 18 years or younger are affected by diabetes. Recently, a small amount of money was dedicated to creating the system. An advisory committee began working in July of 2006 to draft rules to implement the law. Both schools and providers are required to report cases of type 1 and type 2 diabetes to the database. A pilot project was conducted in the spring of 2007 to test the school side of the system. Implementation of the provider portion of the database began in summer of 2007 with full implementation of the database scheduled for fall of 2007.
What is the purpose?
The database was established so that we can better understand the impact of diabetes on children in Oregon. Although we suspect that the number of children with diabetes in Oregon is increasing rapidly, we don't have the data to know this for certain. The database will collect data about the prevalence and incidence of diabetes occurring in the pediatric population, and will maintain a separate list of families who are interested in participating in scientific and medical research. The data may also be used to assist in making decisions about the allocation of public resources.
Why should we report to the database?
The database will only give an accurate picture of the impact of diabetes among children in Oregon if the information that it contains is complete. For the database to be effective in helping to address the needs of children with diabetes, it is important that we collect information on as close to 100% of Oregon's diabetic children as possible. School reporting to the database requires parental consent. But provider reporting does not. Because some parents may opt out of the school reporting process, it is especially important that providers submit information on all diabetic children who are treated in their practices.
What should we tell parents about the database?
The database is maintained on a secure computer at the Public Health Division. The information is also granted legal protection under Oregon law and cannot be accessed even by court subpoena. Information will be shared with others only in aggregate form (e.g., in the form of incidence and prevalence rates). Once a child is in the database, the Diabetes Program will contact parents directly and offer the option to accept or decline contact regarding research opportunities. Parents who wish to participate in research opportunities will be made aware of research opportunities that arise. Researchers who wish to contact these families must meet strict standards and confidentiality requirements.
What are the risks?
The main risk is possible illegal access to database records by someone without authorization (like an insurance company) that parents wouldn't want to share information with. The security measures described in the previous section are intended to prevent such illegal access.
FAQ for Providers (pdf)
Reporting form
Provider Reporting Form (pdf)
Provider Reporting Form (doc)
4. Information for Parents
Below is a trifold brochure with some basic information for parents about the Childhod Diabetes Database. Health care practitioners can also distribute these brochures to families with children with diabetes.
Informational Brochure for Parents - English (pdf)
5. Oregon Law, Administrative Rules and HIPAA
Childhood diabetes database law
444.300 Department of Human Services database on childhood diabetes; rules. (1) Subject to available funding, including gifts, grants or donations, the Department of Human Services shall establish a uniform, statewide database for the collection of information on Type I and Type II diabetes occurring in children in Oregon. The purposes of the database shall be to collect and serve as a repository for data about the prevalence and incidence of diabetes occurring in the pediatric population of this state and to make the data available for scientific and medical research and for assistance in making decisions about the allocation of public resources.
(2) The database established by subsection (1) of this section shall include data provided to the department by schools and physicians as required by ORS 444.310 and 444.320.
(3) The department shall adopt rules:
(a) Necessary to carry out the purposes of ORS 444.300 to 444.330, including but not limited to the reporting format and the effective date after which reporting by schools and physicians shall be required; and
(b) Under which confidential data may be used by third parties to conduct research and studies for the public good. [2001 c.719 §1]
444.310 Annual survey of students. The Department of Human Services shall conduct an annual survey, to be completed by June 15, of all public schools, public charter schools and registered private schools in Oregon to collect data about diabetes occurring in students. Each school surveyed shall report to the department for each student enrolled at the school who has Type 1 or Type II diabetes:
(1) The name and address of the student;
(2) The gender of the student;
(3) The date of birth of the student;
(4) The type of diabetes diagnosed; and
(5) The date of diagnosis. [2001 c.719 §2]
444.320 Physician report of childhood diabetes. (1) As used in this section, "child" means an individual 18 years of age or younger.
(2) In accordance with ORS 444.300, upon diagnosing or first treating a child with Type I or Type II diabetes, a physician shall report to the Department of Human Services:
(a) The name and address of the child;
(b) The gender of the child;
(c) The date of birth of the child;
(d) The type of diabetes the child has; and
(e) The date of diagnosis or first treatment by the reporting physician. [2001 c.719 §3]
444.330 Confidentiality of information. All identifying information regarding individual children that is reported to the Department of Human Services pursuant to ORS 444.300 to 444.330 shall be confidential and privileged. Except as required in connection with the administration or enforcement of public health laws or rules, no public health official, employee, agent or other person entitled to access or use data under ORS 444.300 to 444.330 shall be examined in an administrative or judicial proceeding as to the existence or contents of data in the database established under ORS 444.300 to 444.330. Research and studies conducted using confidential data from the statewide database must be reviewed and approved by the body used by the department as the Committee for the Protection of Human Research Subjects and established in accordance with 45 C.F.R. 46. [2001 c.719 §4]
Oregon Law - English (pdf)
Childhood diabetes database administrative rules
DEPARTMENT OF HUMAN SERVICES, PUBLIC HEALTH DIVISION
CHAPTER 333
DIVISION 10
HEALTH PROMOTION AND CHRONIC DISEASE
PREVENTION
Childhood Diabetes Database
333-010-0600
Definitions
(1) “Case” means a reportable case of type 1 or type 2 diabetes in an individual who is 18 years of age or younger, and a resident of Oregon.
(2) “Diabetes Program” means the Oregon Diabetes Prevention and Control Program of the Department of Human Services, Public Health Division, the program authorized to collect, receive, and maintain a childhood diabetes database under ORS 444.300.
(3) “Date of diagnosis” means the date of initial diagnosis by a practitioner of a case of diabetes being reported to the Diabetes Program.
(4) “Effective Date” means the date after which reporting by schools and physicians shall be required.
(5) “Identifying information” includes, but is not limited to the student’s name, address, date of birth, and information that identifies the individual or could be used to identify the individual, and relates to the individual's past, present or future health, and the provision of healthcare to the individual. "Identifying information" also includes “Individually Identifiable Health Information” as that is defined in the 1996 Health Insurance Portability and Accountability Act and “Directory Information” as that is defined in the Federal Family Educational Right to Privacy Act (FERPA) (20 U.S.C. § 1232g; 34 CFR Part 99).
(6) “Practitioner” means any person whose professional license allows him or her to diagnose or treat diabetes patients.
(7) “Reportable childhood diabetes” means a medical condition, occurring in a person aged 18 years or younger, and meeting the criteria for diagnosis of diabetes in a child as outlined by the American Diabetes Association. (Reference: American Diabetes Association. Standards of Medical Care in Diabetes. Diabetes Care 2005; 28 [Supplement 1]: S4-S36.)
(8) “School” means any public, public charter, or registered private school in Oregon.
Stat. Auth.: 444.300
Stats. Implemented: 444.300-ORS 444.330
333-010-0610
General Authority and Purpose
According to ORS 444.300(1), subject to available funding, including gifts, grants or donations, the Diabetes Program shall establish a uniform, statewide database for the collection of information on type 1 and type 2 diabetes occurring in children in Oregon. The purposes of the database shall be to collect and serve as a repository for data about the prevalence and incidence of diabetes occurring in the pediatric population of this state and to make the data available for scientific and medical research and for assistance in making decisions about the allocation of public resources.
Stat. Auth.: ORS 444.300
Stats. Implemented: ORS 444.300 – ORS 444.330
333-010-0620
Reporting Requirements for Schools
(1) The Diabetes Program shall conduct an annual survey to collect information about diabetes occurring in students age 18 years or younger. Preferably the survey will be completed and returned to the Diabetes Program within 30 days of the date the survey or electronic survey link is sent out, but in no event, later than June 15 of each year.
(2) Each school surveyed, upon receipt of written consent of the parent, guardian (or of the student if age18 years) shall report to the Diabetes Program for each student enrolled at the school, during the academic year, who has type 1 or type 2 diabetes, the following information:
(a) The name and address of the student;
(b) The sex of the student;
(c) The date of birth of the student;
(d) The type of diabetes diagnosed (if known);
(e) The date of diagnosis; (if known); and
(f) The name of the child’s practitioner (if known).
Stat. Auth.: ORS 444.300
Stats. Implemented: ORS 444.300-ORS 444.330
333-010-0630
Reporting Requirements for Practitioners
(1) Upon diagnosing or first treating a case of type 1 or type 2 diabetes in an Oregon child, a practitioner shall report the following information to the Diabetes Program:
(a) The name and address of the child;
(b) The sex of the child;
(c) The date of birth of the child;
(d) The type of diabetes diagnosed;
(e) The date of diagnosis or first treatment by the reporting practitioner; and
(f) The measured height and weight of the child.
(2) The practitioner shall report the case to the Diabetes Program within 30 days of diagnosing or first treating the child.
(a) The practitioner shall report the case using the Diabetes Program's Practitioner Childhood Diabetes Report Form. The report may be sent to the Diabetes Program by mail, electronically, or by fax. Copies of the form, and directions for submission may be obtained from the Diabetes Program, 800 NE Oregon Street, Portland, Oregon 97232; or may be downloaded through the Diabetes Program’s website.
(b) The Diabetes Program may elect to supplement passive reporting from practitioners with active solicitation of reporting through periodic contacts with certain practitioners.
Stat. Auth.: ORS 444.300
Stats. Implemented: ORS 444.300- ORS 444.330
333-010-0640
Confidentiality and Access to Data
(1) All identifying information regarding individual patients, reporting schools, and practitioners reported pursuant to OAR 333-010-0620 and 333-010-0630 shall be confidential and privileged. Except as required in connection with the administration or enforcement of public health laws or rules, no public health official, employee or agent shall be examined in an administrative or judicial proceeding as to the existence or contents of data collected under the childhood diabetes database.
(2) The information collected and maintained by the diabetes database shall be stored in physically secure locations and in a technologically secure manner, and shall be used solely for the purposes stated in ORS 444.330
Stat. Auth.: ORS 444.300
Stats. Implemented: ORS 444.300- ORS 444.330
333-010-0650
Research Studies
(1) Prior to any confidential data from the database being released to a researcher, the researcher must:
(a) Obtain approval from the Department of Human Services, Public Health Division Institutional Review Board, established in accordance with 45 C.F.R. 46.
(b) Obtain approval from the Diabetes Program.
(2) In reviewing research proposals for approval under section (1)(b) of this rule, the Diabetes Program, with input from its advisory committee, shall consider whether theresearch will:
(a) Further knowledge of the prevalence and incidence of diabetes occurring in the pediatric population;
(b) Better define causes of and treatment for childhood diabetes; or
(c) Inform decision-making about the allocation of public resources.
(3) The Diabetes Program shall also ensure that the research proposal has been reviewed for scientific excellence by a nationally recognized peer review group.
(4) Prior to confidential information being released to a researcher, the Diabetes Program will contact the family and offer the option to decline contact regarding research opportunities.
Stat. Auth.: ORS 444.300
Stats. Implemented: ORS 444.300- ORS 444.330
333-010-0660
Advisory Committee
(1) The Diabetes Program may convene an advisory committee to make recommendations regarding the Diabetes Program's use of the database, and to assist in reviewing research proposals under OAR 333-010-0650.
(2) Advisory committee members may not have access to confidential information provided to the program under ORS 444.300 to 444.320.
(3) The advisory committee shall be composed of persons with a professional or personal interest in childhood diabetes.
Stat. Auth.: ORS 444.300
Stats. Implemented: ORS 444.300- ORS 444.330
Administrative Rules - English (pdf)
HIPAA law
Health Insurance Portability and Accountability Act of 1996 (HIPAA)*
EFFECT ON STATE LAW
SEC. 1178
(a) GENERAL EFFECT –
(1) GENERAL RULE – Except as provided in paragraph (2), a provision or requirement under this part, or a standard or implementation specification adopted or established under sections 1172 through 1174, shall supersede any contrary provision of State law, including a provision of State law that requires medical or health plan records (including billing information) to be maintained or transmitted in written rather than electronic form.
(2) EXCEPTIONS – A provision or requirement under this part, or a standard or implementation specification adopted or established under sections 1172 through 1174, shall not supersede a contrary provision of State law, if the provision of State law –
(A) is a provision the Secretary determines –
(i) is necessary –
(I) to prevent fraud and abuse;
(II) to ensure appropriate State regulation of insurance and health plans;
(III) for State reporting on health care delivery or costs; or
(IV) for other purposes; or
(ii) addresses controlled substances; or
(B) subject to section 264(c)(2) of the Health Insurance Portability and Accountability Act of 1996, relates to the privacy of individually identifiable health information.
(b) PUBLIC HEALTH – Nothing in this part shall be construed to invalidate or limit the authority, power, or procedures established under any law providing for the reporting of disease or injury, child abuse, birth, or death, public health surveillance, or public health investigation or intervention.
(c) STATE REGULATORY REPORTING – Nothing in this part shall limit the ability of a State to require a health plan to report, or to provide access to, information for management audits, financial audits, program monitoring and evaluation, facility licensure or certification, or individual licensure or certification.
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*NOTE: Full text of HIPAA law can be found at:http://www.hhs.gov/ocr/hipaa/
HIPAA Law - English (pdf)
6. Related Links
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Full spectrum of information on the HIPAA Law
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1-800-8211; DIABETES (1-800-8342-2383) The American Diabetes Association offers free information on ways to manage diabetes, including nutrition, exercise and complications from diabetes. You can also get information on local diabetes education programs and agencies, as well as advocacy services.
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This is the local chapter of the American Association of Diabetes Educators, a group of local diabetes educators.
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The National Diabetes Information Clearinghouse (NDIC) is an information dissemination service of the National Diabetes and Digestive and Kidney Diseases (NIDDK). 1-800-8211; 860-8747
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NDEP is a partnership of the National Institutes of Health, the Centers for Disease Control and Prevention, and more than 200 public and private organizations. NDEP provides information on diabetes prevention and control for many different ethnic groups.
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An organization concerned with health issues and education which promotes effective school nursing services to improve the health status of children and youth.
