Health Information Technology Survey for Newborn Screening Programs SUMMARY DATA REPORT
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1 Health Information Technology Survey for Newborn Screening Programs SUMMARY DATA REPORT NOVEMBER 2014
2 The development of this report was 100% supported with federal funds from a $975,000 Cooperative Agreement #U22MC24078 from the Health Resources and Services Administration (HRSA) and a $1.4 million Cooperative Agreement #U60HM from CDC. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of HRSA or CDC. Copyright 2014, Association of Public Health Laboratories. All Rights Reserved.
3 Purpose The Association of Public Health Laboratories Newborn Screening Technical assistance and Evaluation Program (NewSTEPs) wanted to assess the current status of the implementation of health information technology (HIT) within Newborn Screening (NBS) programs and identify gaps and barriers to NBS HIT implementation. In addition, the APHL NBS HIT workgroup was in the process of assessing HIT needs among NBS programs. The survey served as a first step in determining this baseline information and to shape the technical assistance resources and tools that the workgroup can provide. Methods APHL staff from both the Informatics program and the Newborn Screening and Genetics program, along with member HIT experts, contributed to the development of the survey. One representative from each NBS program in the country received the survey electronically, with respondents encouraged to seek information from other individuals (including HIT personnel) when completing the survey. The 29 question survey remained open for response for 31 days, between November 13, 2013 and January 3, Newborn Screening HIT Survey Report 1
4 Results 1. Survey Participation 33 NBS programs completed the survey. 3. What information system(s) does your newborn screening laboratory currently use? Please choose all that apply (N=33). Neometrics/Natus 13 41% StarLims 2 6% PerkinElmer 14 44% OZ Systems 0 0% Internally Developed 4 13% Other (please specify) 11 34% Other responses Horizon (Chemware) Maven (Consilence) None Chemware ORACLE System IBM Lotus Quickr Orchard Harvest. Note that Natus/Neometrics is the follow-up module and still in testing phase. Our lab Contracts for newborn screening laboratory services at the XYZ state laboratory. NeoMate ATL Labware New England Newborn Screening Program (NENSP) 5. What information system(s) does your short-term follow- up program currently use? Please choose all that apply (N=33). Neometrics/Natus 11 33% StarLims 2 6% PerkinElmer 5 15% OZ Systems 2 6% Internally Developed 11 33% Other (please specify) 10 30% 2 ASSOCIATION OF PUBLIC HEALTH LABORATORIES
5 Other responses Maven (Consilence) None Envision Both ORACLE System and IBM Lotus QuickR MOHSAIC State CHRIS (Child Health Referral and Information System Gold Systems) Labware NENSP 7. Are your NBS laboratory and short-term follow-up program IT applications integrated (N=33)? Yes 28 84% No 5 16% Total % 8. How are the programs integrated (N=27)? 1 Fully automated 24 88% Partially automated (e.g. someone does a periodic data upload from lab to follow-up) 3 12% Manual 0 0% Total % 9. Currently, is your NBS program data exchanged electronically (N=33)? Yes 16 47% No 17 53% Total % 1 One NBS program did not respond Newborn Screening HIT Survey Report 3
6 10. At what stage is your NBS program in implementing electronic data exchange? (N=18) 2 Have not considered yet 1 5% Have considered but not begun planning 7 45% Planning stage 4 20% Testing stage 6 30% Total % 11. With whom are you currently transmitting any NBS data electronically, and how? Please choose all that apply (N=16). Question Fully Partially Manual Total Automatic Automatic Responses Birthing hospitals Physicians Other State NBS Programs Vital Records Immunization registry EHDI database CCHD database Birth defects registry Short-term follow up Long-term follow up Health Information Exchange NBSTRN LPDR NBSTRN R4S NBSTRN VRDBS Regional collaborative databases KEY: CCHD = Critical Congenital Heart Disease; EHDI = Early Hearing Detection & Intervention; NBSTRN = Newborn Screening and Translational Research Network; LPDR = Longitudinal Pediatric Data Resource; R4S = Region 4 Stork Laboratory Performance Database; VRDBS = Virtual Repository of Dried Blood Spots 2 Two programs that are currently exchanging data electronically are in the testing stage 4 ASSOCIATION OF PUBLIC HEALTH LABORATORIES
7 12. What type of NBS data are you exchanging? Please check all that apply (N=14). 3 NBS Orders 6 43% NBS Results 12 86% Other (please specify) 9 64% Other responses Aggregate data to Region IV Stork database (R4S) Limited NBS results available to PCPs: screening done yes/no; results normal yes/no; repeat needed yes/no. Match to Vital Statistics data Download of Hepatitis B results to immunizations None Only some hospitals are set up to do this. Short-term follow-up This is only with the Mayo Clinic who completes some of the newborn screening testing We are receiving NBS results automatically from the lab and sharing the results with physicians via a web-based portal. We share the Neometrics database with the Early Hearing Detection & Intervention (EHDI) program, Follow-up and lab. We transmit Hemoglobin Results to the XYZ Sound Blood Center Cord Blood Donation Program. We are testing our electronic messaging for transmission to hospitals. Tandem Mass Spectrometry data is uploaded into R4S via Comma Separated Value (CSV) file. 13. In what format does your NBS program transmit the following? Question HL7 XML file CSV file Total messaging transfer transfer Responses NBS Orders NBS Results Other Data If your program transmits data using another method, please describe it below: Responses Data system also accepts XML and CSV format data. State PH Laboratory website (access through Secure Remote Viewer and Citrix Access Gateway) We also send electronic PDF result report to some of the state programs. Chemware Results by PDF. Orders by web form. Web-based log in to Public Health database. Read only. We send hemoglobin results to the XYZ Sound Blood Center Cord Blood donation program via SFT. 3 Two programs did not respond Newborn Screening HIT Survey Report 5
8 15. If your NBS program is using an integration engine to support data exchange activities, please select which one. Rhapsody 5 56% Mirth 1 11% Cloverleaf 0 0% BizTalk 0 33% Other (please specify) 3 0% Total 9 100% Other responses Cloverleaf is used by the Mayo Clinic to transfer a NBS Order into their system. The results from the Mayo Clinic are sent to state and Rhapsody is used to integrate the message. Interfaceware Iguana 16. If you use HL7 messaging, what version of HL7 are you using? HL % HL % HL7 3.x 0 0% Other (please specify) 2 25% Total 8 100% Other specified responses HL If using HL7 messaging, what HL7 messaging guide did you use for the implementation? Answer Response PHII NBS HL Results implementation 0 guide PHII NBS HL7 v2.5.1 Order implementation 2 guide PHII NBS HL7 v2.5.1 Results implementation 2 guide HRSA/NLM annotated HL7 v2.5.1 example 1 Results message Other (please specify) 4 6 ASSOCIATION OF PUBLIC HEALTH LABORATORIES
9 Other responses [X] HRSA/NLM Guidance for Sending Electronic Newborn Screening Results with HL7 Messaging, Version 5.2 [X] Newborn Screening panel American Health Information Community (AHIC) Standard HL , not NBS specific We only use HL7 messaging with OZ systems. OZ uses generic HL7 guides for ADT messages. We started before any of these guides were available. It is our own implementation. 18. Do you use a code set/controlled vocabularies in your NBS program (N=31)? 4 Yes 15 48% No 16 52% Total % 19. Which code sets/controlled vocabularies do you use in your NBS Program? Question LOINC SNOMEDCT ICD-9 ICD-10 Local Other Total codes Responses NBS Laboratory NBS Followup Program If you use other code sets/controlled vocabularies that are not listed above, please describe them: Responses Codes developed by State Public Health Laboratory for diagnosed conditions/disposition 21. Does your NBS laboratory have a web portal for NBS data sharing (N=30)? 5 Yes 13 43% No 17 57% Total % 22. Does the web portal provide the following facility statistics (N=13)? Turnaround time 5 38% Adhoc reports 3 23% Number of rejected samples 7 54% Other (please specify) 8 62% 4 Two programs did not respond 5 Three programs did not respond Newborn Screening HIT Survey Report 7
10 Other responses No reports Specimen timing errors, transit errors, collected Result reporting, Samples received by laboratory, Statistics for Health departments on number of births, number of disease cases, etc. Individual specimen metric Web portal is in development and not implemented at this time. Multiple reports run daily to assist with short term follow-up plus quarterly quality assurance and missing demographic reports that are sent to hospitals. All above are in planning/testing Test result reports Submission volume, most common unsats, Transit time, adherence to ideal collection timeframes, quantity of specimens received with missing key information 23. Who can access the information on the web portal (N=13)? Physicians 9 69% Birthing hospitals 11 85% Other (please specify) 7 54% Other responses NBS staff Health Department from 3 states Follow-up staff from 3 states NBS Program personnel from DHHS Office for family services; agency for foster care liaisons Midwives, medical clinic/office personnel All submitter types midwives, labs, clinics state NBS program staff only 24. How is the data or information accessed on the web portal (N=13)? View only 6 46% Download of a report (PDF, Word) 10 77% Download of data 4 31% Other (please specify) 5 38% Other responses NBS is able to edit specified fields Individual results Web portal is in development and not implemented at this time. Depends on your access/security level and need State NBS program can print directly from lab. Cannot save as a file. 8 ASSOCIATION OF PUBLIC HEALTH LABORATORIES
11 25. What internet browser(s) does your NBS program use (e.g., Internet Explorer, Firefox, Chrome, etc.)? Please provide version numbers. Answer Response Internet Explorer (7, 8, 9, 10, 11) 28 Firefox 6 Chrome 4 Safari 1 CITRIX based platform NewSTEPs plans to allow submission through a comma separated value (CSV) file transfer. Will you be able to submit data this way (N=31)? 6 Yes 21 68% No 10 32% Total % 27. If you cannot use CSV file transfer, please describe why you cannot. NewSTEPs wants to work with you to determine how you can best transfer data (N=7). 7 Responses Any data transfer would require the Office of General Counsel and the HIPPA officer approval so we are unsure at this point if we could upload using CSV files. As the Program Chief, I would be compiling reports to submit, completely de-identified. Because using a regional lab means that some babies' info is obtained in more than one state, I would also need to decide which state is going to report on a specific baby. I would prefer to use the method I used before, which was submitting select individual data. State NBS program would probably be able to submit aggregate data as requested, such as numbers screened in a year, etc. CSV file creation and transfer is not currently available in our system and would require further development and cost. Development and transfer of an HL7 file would require less additional development. I presumably can use a CSV file to transfer, but not presently able to generate the reports. I am working with Natus to create universal reports that might be used by any State using Natus data system. System does not create CSV files. Use of CSV discontinued, working to replace with HL7 We have not fully resolved which data we will be sharing with NewSTEPs. We do upload date into R4S using CSV but Neometrics does not export data via CSV and we use an excel Macro to convert the files. All Neometrics data is currently being mapped to LOINC and HL7 for the electronic messaging, this may be a more viable option for transmitting data to NewSTEPs. 6 Two programs did not respond 7 Three programs did not respond Newborn Screening HIT Survey Report 9
12 28. Please rank your top three NBS IT related challenges in order of importance (1=most important, N=31): 8 Question Total Responses Competing priorities Lack of funding to make improvements or upgrades Lack of IT expertise Unclear value of investment System does not support data transfer System does not support LOINC and SNOMED codes Integration with hospital systems is too complex Not enough time to make required changes Other responses Although we recognize these as challenges, it has not prevented us from moving ahead. Integration and adaptation of LOINC codes Confidentiality 29. Please rank your unmet NBS IT related workforce needs in order of importance with 1 being most important and 5 being least important (N=31). 9 Question Total Responses Workforce and services to map test names and test results to LOINC and SNOMED codes Laboratory person to bridge knowledge between IT and Informaticians Computer/IT Personnel Person to lead upgrade Staff trained on how to use the LIMs Two programs did not respond 9 Two programs did not respond 10 ASSOCIATION OF PUBLIC HEALTH LABORATORIES
13 Other responses I am the only FTE in my program, with limited administrative support. There is no assigned IT person, and when I have needs must compete with the rest of the department for IT support. It is unclear what you mean by unmet. We are doing these. None of the above needs are unmet, although additional resources would expedite the process. Staff to assist with new project testing; Staff to assist with ongoing change validations. Newborn Screening HIT Survey Report 11
14 Association of Public Health Laboratories The Association of Public Health Laboratories (APHL) is a national nonprofit dedicated to working with members to strengthen laboratories with a public health mandate. By promoting effective programs and public policy, APHL strives to provide public health laboratories with the resources and infrastructure needed to protect the health of US residents and to prevent and control disease globally Georgia Avenue, Suite 700 Silver Spring, MD Phone: Fax: Web: A Program of the Association of Public Health Laboratories TM 12 ASSOCIATION OF PUBLIC HEALTH LABORATORIES
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