2. American Diabetes Association Professional Practice and Executive Committees: Diabetes Care, Volume 21, Supplement 2, B161-7, 1998. …
Childhood Diabetes Database Procedure Manual
Written by:
Nina Fekaris, RN, BSN, MS Beaverton School District, Health Services Oregon School Nurses Association
May, 2007
Childhood Diabetes Database Procedure Manual Acknowledgements
This procedure manual has been produced to orient school nurses to the system developed to collect and report required information regarding students with diabetes This information has been reviewed by the Oregon Department of Education, Office of Student Learning and Partnership, School Health Services, and reviewed and approved by the Oregon Department of Human Services, Public Health Division The Oregon School Nurses Association grants permission for photocopying information contained within this manual and for reproduction of all forms contained within Special thanks and appreciation to the following individuals who provided input and review: Richard Leman, MD Medical Epidemiologist Health Promotion and Chronic Disease Prevention Oregon Department of Human Services, Public Health Division Kathryn M Delaney Oregon Diabetes Program Oregon Department of Human Services, Public Health Division Leslie Currin, RN School Health Services Specialist Office
of Student Learning Partnership Oregon Department of Education
Materials produced: May, 2007
Childhood Diabetes Database School Reporting Procedure
Background Information
The Childhood Diabetes Database was established to better understand the impact of diabetes on Oregons children and to support research to improve diabetes care Schools are required to report cases of diabetes among students age 18 years or younger to the Oregon Department of Human Services, Public Health Division See Appendix A for the Oregon Administrative Rules The purposes of the Childhood Diabetes Database are to serve as a repository for data about the prevalence and incidence of diabetes occurring in the pediatric population, to support diabetes research, and for assistance in making decisions about the allocation of public resources The database will be maintained by the Oregon Department of Human Services, Public Health Division
School Nurses Role
The school nurse has direct contact with parents and students with diabetes and is the primary contact in the schools for the Childhood Diabetes Database Schools may assign another school staff person to complete this reporting procedure if school nurse is
not available The role of the school nurse is to: Understand and be able to explain basic information about the Childhood Diabetes Database to school staff, parents and students Be able to refer parent/guardian who need more information to the Oregon Diabetes Program, Childhood Diabetes Database Obtain permission from parent/guardian or student if over the age of 18 years before reporting information to the database Accurately complete the School Reporting Form Submit information in a timely manner
Identifying Students with Diabetes
When registration forms have been completed by students families at the beginning of the school year, the school nurse or assigned school staff member will review them to identify all students age 18 years and younger who have indicated the health/medical condition of diabetes The school nurse or school secretary will then assemble a list with the names and contact information for these students and their families See Students with Diabetes form in Forms section in the back of this manual Throughout the course of the school year as new students with diabetes transfer into the school, or current students receive a new diagnosis of diabetes, their names
and contact information will also be added to the list For a student to be included in the database the student must have the diagnosis of diabetes, Type 1 or Type 2 Refer to Appendix A, OAR for a complete definition of diagnostic criteria
Informing Students / Parents about the Database
The school nurse or other assigned staff will contact the parent/guardian of each student on the list or talk with the student directly if the student is age 18 and provide information about the Childhood Diabetes Database, parental consent School Reporting form A script is provided in Appendix B It is recommended that when the school nurse is developing and/or updating Diabetic Health Management Plans at the beginning of each school year or when a new diabetic is diagnosed they include parent information Frequently Asked Questions, and School Reporting Form in their packet of information used to complete the Diabetic Health Management Plan Information regarding the database should be shared with families when they are first contacted by the school nurse in regards to the development of the school Diabetic Health Management Plan
Obtaining Consent to Share Information
For each student with
diabetes, the school nurse or other assigned staff member will complete student information on the Childhood Diabetes Database School Reporting Form School Reporting Form: instructions Include the school name and district The school nurse, or assigned school staff person is the school contact name The Student Secure Identification Number SSID is NOT the students identification number, school enrollment number, or social security number The SSID is a number assigned to each student registered in an Oregon public school, and is assigned by the Oregon Department of Education To find out where your district records the SSID, ask your school registrar or Information/Technology department Please check the box for Type 1 or Type 2 The unknown box is available if you or the parent/guardian are unsure whether the diabetes is Type 1 or Type 2
When the student information, including the SSID, is written on the School Reporting Form, give form to the parent/guardian with the other database information sheets It may be handed to them with the other Diabetic Health Management Plan forms, or it may be mailed to them Instruct parent/guardian that if they agree to have their childs information
reported to the Childhood Diabetes Database, they need to sign the form Signed forms are to be returned to the school nurse, or assigned school staff person Provide contact information if parent/guardian should have questions regarding the database
Reporting Information to the Database
All signed School Reporting Forms received by the school nurse on which the parent/guardian or student, if age18 years, has indicated consent to share information, will be mailed to the Childhood Diabetes Database at the following address: Oregon Diabetes Program Childhood Diabetes Database 800 NE Oregon St, Suite 730 Portland, Oregon 97232 Signed forms may also be faxed to the Oregon Diabetes Program @ 971-673-0994 The school nurse may elect to keep the original consent form for their records following the guidelines under Division 400: Educational Service District, School Districts, and Individual School Records: 166-400-0010 30 Student Health Records See Appendix A These forms are NOT to be stored in the students cum file These forms are considered confidential health information and should be stored with the student health records Schools are asked to submit School Reporting Forms to the
Childhood Diabetes Database by the last Friday in October, or throughout the school year, whenever new diabetics enter the school Database school reporting information will be obtained by the school nurse and submitted every year to the Childhood Diabetes Database No follow up is necessary if parents do not elect to sign or return School Reporting form However, parents should be re-contacted and offered the opportunity to supply information to the database the following year
Forms
Copies of forms may be found in the back of this manual under Forms tab Or you may obtain forms by contacting: Oregon Diabetes Program Childhood Diabetes Database 800 NE Oregon St, Suite 730 Portland, Oregon 97232 Forms are also accessible through the Programs Website: wwworegongov/DHS/ph/hpcdp From the Oregon School Nurses Association at: orschoolrnorg
And on the Oregon Department of Education website in yellow search box, type in school nurse: wwwodestateorus
Resources / Contact
The Childhood Diabetes Database was established in accordance with ORS 444300-330 in 2001 Funding was secured, and the database became operational in 2007 with the approval of OAR 333-010-0600-0660 See Appendix A for copies
of ORS and OAR For more information regarding the database, contact: Oregon State Diabetes Program Childhood Diabetes Database 800 NE Oregon St, Suite 730 Portland, Oregon 97232 971-673-0984 For information regarding school implementation and reporting, contact: School Health Services Specialist Oregon Department of Education 255 Capitol St NE Salem, OR 97310 503-947-5812
Appendix A
OREGON REVISED STATUTES CHILDHOOD DIABETES DATABASE
444300 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 444310 and 444320 3 The department shall adopt rules: a Necessary to carry out the purposes of ORS 444300 to 444330, 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 c719 1] 444310 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 c719 2] 444320 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 444300, 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 c719 3] 444330 Confidentiality of information All identifying information regarding individual children that is reported to the Department of Human Services pursuant to ORS 444300 to 444330 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 444300 to 444330 shall be examined in an administrative or judicial proceeding as to the existence or contents of data in the database established under ORS 444300 to 444330 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 CFR 46 [2001 c719 4] Copy of
complete document found at: http://wwwlegstateorus/ors/444html
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 444300 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 students name, address, date of birth, and information that identifies the individual or could be used to identify the individual, and relates to the individuals 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 USC 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 conditi 
on, 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: 444300
Stats Implemented: 444300-ORS 444330
333-010-0610 General Authority and Purpose According to ORS 4443001, 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 444300 Stats Implemented: ORS 444300 ORS 444330 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 childs practitioner if known Stat Auth: ORS 444300 Stats Implemented: ORS 444300-ORS 444330 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 Programs 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 Programs 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 444300 Stats Implemented: ORS 444300- ORS 444330 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 444330 Stat Auth: ORS 444300 Stats Implemented: ORS 444300- ORS 444330 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 CFR 46 b Obtain approval from the Diabetes Program 2 In reviewing research proposals for approval under section 1b of this rule, the Diabetes Program, with input from its advisory committee, shall consider whether the research 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 444300 Stats Implemented: ORS 444300- ORS 444330 333-010-0660 Advisory Committee 1 The Diabetes Program may convene an advisory committee to make recommendations regarding the Diabetes Programs 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 444300 to 444320 3 The advisory committee shall be composed of persons with a professional or personal interest in childhood diabetes Stat Auth: ORS 444300 Stats Implemented: ORS 444300- ORS 444330
The Oregon Administrative Rules contain OARs filed through May 15, 2006
SECRETARY OF STATE, ARCHIVES DIVISION
DIVISION 400
EDUCATIONAL SERVICE DISTRICTS, SCHOOL DISTRICTS, AND INDIVIDUAL SCHOOL RECORDS 166-400-0010 30 Student Health Records Records document student health care responsibilities and activities performed by school or district health professionals or non-health staff These records are maintained by the school nurse or another individual designated by the district to maintain confidential health information Records may include but are not limited to medication administration records; records of nursing assessment and nursing care given in the school setting; School Health Management Plans prepared by the nurse for students with special health needs, medical records from outside health care providers and health care agencies; and psychological diagnostic test reports Health information
provided to Special Education for determining eligibility and IEP activity is maintained in the Special Education record and forwarded upon transfer of the student record School nurse records are medical records subject to issues of confidentiality and exemption from disclosure per ORS 192496 Health record information is protected and should be treated as other student records Records that are made or maintained separately and solely by a licensed health care professional who is not employed by the educational agency or institution, and are not used for education purposes of planning, are excluded from educational record provisions See Oregon Department of Education student health record policies for further clarification SEE ALSO Student Health Screening Records and Student Immunization Records in this section Minimum retention: Until student reaches age 21 or graduates, whichever is longer 31 Student Health Screening Records Records document the health screening status of students and mandated certifications of health Required health screening records include vision and hearing screening results; Certificate of Immunization Status; and Tuberculosis TB Clearance Certificate if
required by law according to the students birth country Records may also include but are not limited to communications related to health and safety and directed to the school from the parent/guardian or health care provider regarding the students attendance, participation, or activities; communications which are directed to the school by health care providers; and documentation of first aid given, and instructions sent to parents/guardians regarding these screening and first aid events These records are part of the Student Education Record and are transferred if the student transfers to a new district See Oregon Department of Education student health record policies for further clarification SEE ALSO Student Health Records and Student Immunization Records in this section Minimum retention: Until student reaches age 21 or graduates, whichever is longer
Appendix B
Childhood Diabetes Database
Script
There is a new program in the State of Oregon for children with Diabetes that I would like to tell you about, the Childhood Diabetes Database The Database was set up 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 will be used to improve our understanding of what diabetes looks like around the State Information may also be used to improve diabetes care It may even help recognize things that increase childrens risk for diabetes, perhaps even helping to prevent much of it I have an information sheet for you that explains this project in more detail and also a School Reporting Form Please review the information and complete the information on the School Reporting Form If you agree to have your childs information included in the Database please sign the form and return it to me If you would like more information about the Database please contact the Oregon Diabetes Program at 971-673-0984
Forms
Childhood Diabetes Database School Reporting Form
Form available in separate file titled CDD School Reporting Form
Oregon Diabetes Program Childhood Diabetes Database 800 NE Oregon St Portland, OR 97232-2162 971-673-0984
Frequently Asked Questions Childhood Diabetes Database
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 childrens 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 wouldnt want to share information eg, 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 eg, 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 schools role in this process? We recognize that school nurses play an important role in developing plans at school to insure that your childs 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 nurses role is to ask you if you want to have your childs 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 above
Students With Diabetes
Please list all students with diabetes This information can be found on the registration forms Please return completed form to your School Nurse
Student Name
Parent Name
Phone number
Source:oregon.gov
