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Birth Defects Work Group - Augus

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					Birth Defects Work Group
**Revised Minutes** Minnesota Department of Health (MDH) Snelling Office Park 1645 Energy Park Drive - St. Paul August 12, 2004 Birth Defects Staff (MDH/EIA): Maureen Alms, Becky Bernauer, Myron Falken, Barbara Frohnert, Rebecca Kenow, Daniel Symonik, and Ellen Zager Present: Carolyn Anderson; Dana Doescher Brown; James Gurney; John Hurley; Lola Jahnke; Marianne Keuhn; Jamie Lohr, MD; Richard Lussky, MD; Kristin Peterson Oehlke; Penny Stavlos; Pam Van Zyl York; and Nancy Vanderburg Absent: Laurel Briske; Kathryn Draeger; Vincent Garry, MD; Betsy Hirsch; Virginia Lupo, MD; Mark McCann; Nancy Mendelsohn, MD; John Oswald; Nina Perdue, MD; Barbara Yawn, MD; and Abbie Young The meeting began with introductions. CDC Site Visit: Myron Falken and Dan Symonik gave a synopsis of the CDC site visit that was held the same week. MDH discussed tactics with CDC regarding the upcoming implementation grant in order to “position (MDH) for success.” Jamie Lohr asked how competitive the grants were, what percentage gets funded, etc. Dan said that it was likely that all the grant proposals would be funded, but on a shoestring budget of around $200,000/year. One thing that looks good for Minnesota is that we have a referral process set up with the Minnesota Children with Special Health Needs (MCSHN) program. Pam Van Zyl York referred to the report from the Trust for America’s Health/Pugh Foundation. Becky Kenow discussed how Minnesota originally received an “F” rating for birth defect surveillance, but she expects our rating to increase now, especially with the new legislation passed in May 2004. Children’s Hospital/HCMC pilots: Myron reviewed the results from the retrospective study at a large birthing hospital of 2001 births to determine if hospital discharge summary data and birth certificate data were useful for identifying birth defects. The process is being fine tuned; instead of all birth defects undergoing physician review, now only a select subset are required to undergo physician review by Dr. Richard Lussky.

This summer, an intern, Ellen Zager, has been abstracting 300 medical records of children coded with a birth defect that were seen at a large NICU. The main goal of this pilot is to learn how referral hospitals function in order to prepare MDH for the implementation of broader birth defects surveillance in Spring of 2005. For some types of birth defects that require NICU stays, we expect to be able to gather population-based, statewide data by conducting surveillance at all NICU’s in the state. This project is being conducted under the direction of MDH IRBs because even though the new statute exists, there is still a lot of concern about data privacy in the state. MDH’s IRBs have become much stricter as well. Rich Lussky asked if we should be seeking to improve the recording of birth defects on birth certificates. Myron responded that John Oswald from Vital Statistics joined the rest of the birth defects staff during the CDC site visit in order to explore this possibility. The feedback from Larry Edmonds of CDC was that this was not a high priority since the birth certificate data is of limited use; many common birth defects, such as cardiovascular defects, are not recognized until well after the birth certificate has been filed. Someone asked a question about if birth defect surveillance would include perinatal testing units/sites. If we want to determine incidence of birth defects, we would need to identify all cases, even those that do not make it to term. Most states only use live births for their birth defect surveillance. For this reason, only prevalence rates are calculated, not incidence rates. Evaluation of MCSHN Follow Up Activities Barbara Frohnert summarized the results of the previous year’s pilot programs. She described how the birth defects program collaborated with the Minnesota Children with Special Health Needs (MCSHN) program in order to ensure that families with children with a cleft lip/palate, NTD, or chromosomal anomaly received appropriate referrals to programs and services. National Birth Defects Meeting The CDC emphasized that because most surveillance systems include live births, only prevalence can be calculated, not incidence. The CDC funds ten Birth Defects Centers of Excellence in the United States. These centers are accumulating a large data set. When a European study found a relationship between Claritin and hypospadias, the CDC was able to use this data set to show that there was no relationship between Claritin and hypospadias. Folic Acid Education Pam Van Zyl York gave a synopsis of the Folic Acid Council videoconference that was held in June at 7 different sites throughout the state. The topic was “Reaching Latinas about Folic Acid.” Feedback was positive. The conference included a panel of health care workers from a rural perspective and another panel of metro area providers. One member of the rural panel worked through an interpreter, and one site also had an

interpreter for non-English speaking attendees; this experience highlighted some of the challenges of cultural competency. The funding for the Folic Acid Council (FAC) ends soon. There are questions to address about who should facilitate the FAC next (what makes sense, what umbrella it falls under). Jim Gurney brought up a grant that came out from the National Institute of Health (NIH) last week on evaluating/promoting health literacy. He felt that it might be of interest for folic acid education. Grant Objectives: Metro Area Surveillance Myron discussed the plan for multi-source surveillance in the metro area for the first year of the new grant. (The terminology of “active” surveillance is being phased out; surveillance using “multiple sources” for case finding is preferred). This is based on CDCs suggestion that we start small and do it well, and then expand when resources are available and the process is more stable. We expect that we will be able to implement limited multiple-source, population-based surveillance in the first year. At this point, the resources do not exist for statewide surveillance using multiple data sources. MDH thinks a reasonable start would be to begin with the 10-12 birth hospitals with the most births in the state. This makes up about 50% of the states’ births and since they are all located in the metro area, it will be an efficient use of limited personnel (less time will be spent in transit). We would also like to determine if we could use all of the NICUs in the state for some type of statewide surveillance since many children with major birth defects will be transferred to referral hospitals. Continued Statewide Surveillance using Birth Certificate Data Maureen Alms described the ongoing statewide surveillance of NTDs, cleft lip/palate, and chromosomal disorders based on the birth certificates. Confirmed cases are shared with the MCSHN program. Since March, 40 children with one of these birth defects have been identified from the birth certificate. Thirty-three children (82.5%) have been referred to MCSHN. Of these 33 children, 10 referrals were still in progress. Of the 23 completed referrals, MCSHN was able to reach 56.5% by telephone and 10 families (43.5%) received a referral letter in the mail. MCSHN met the goal of reaching families within 3 months of the child’s birth 92.3% of the time. The contact rate and the timeliness of the referral call have really improved over the pilot year. As part of the continuing evaluation of referral activities, birth defects staff and MCSHN will explore how to follow up with the families that received a referral letter instead of a phone call. Myron feels that working with county-level public health will be key for connecting these families with services that are available. Prevention Activities (Folic Acid) This list includes current prevetion activities as well as brainstorming ideas from work group members: • Teratogen hotline

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University of Minnesota – Ed Ehlinger, Director of Boynton Student Health Services, will discuss potential for folic acid education at a meeting with health directors from all MN universities. High schools Shopping Malls Urgent Care ERs Bars Movie Theaters Health Clubs Use funded programs, like those that receive Family Planning grants March of Dimes – give stickers to put on packs of Oral contraceptives to pharmacies Work with providers on surveillance activities of women with diabetes (higher risk pregnancies)

In general, work group members commented that mailings have been found to be the least effective method for educating physicians. They said that working in person with providers is much more effective and suggested the Birth Defects Program consider these sorts of activities for provider education. Becky Bernauer described a recent opportunity that arose to advertise public health messages at the state fair. Birth Defects staff developed a simple poster to be hung on the back of bathroom stalls in the women’s restrooms. The poster is split in two, the left side is a folic acid message, the right side is a message about lead exposure for pregnant women. Rich Lussky asked how this type of activity was to be evaluated to determine its effectiveness. James Gurney agreed that some simple sort of evaluation should be undertaken so that it could support smaller grant requests to fund these sorts of prevention activities in the future if the results are positive. Work Group members reviewed the poster and made a few requests, which BD staff will attempt to incorporate if time permits. Legislative Update Marianne Keuhn from March of Dimes – Minnesota gave a report on the birth defects legislation that passed in May with a lot of support from many legislators. Becky Kenow, Dan Symonik, and Rich Lussky testified at committee hearings. Marianne felt their testimony was really important, especially when the Citizens Council on Health Care (CCHC) was there. Marianne mentioned Representative Bodreau, Senator Sheila Kiscade, and Assistant Commissioner Aggie Leitheiser as key people, without whom the bill might not have gotten passed. The legislation lists many requirements of MDH, one of which is that MDH must provide parents the opportunity to “opt-out” of the Birth Defects Information System. MDH Birth Defects staff reviewed the parent letter and opt-out form with the work group. Many people gave constructive criticism, including the need to have a few parents with a

child with a special health care need review it. It was decided that the letter would be sent out via email to allow all the work group members the opportunity to gather input from their prospective fields and submit suggestions and corrections to MDH. Dan Symonik reiterated that the RFP for the next CDC grant to implement BDIS should be coming out in a few weeks with a deadline in October. These materials will likely be included as part of the grant proposal. Before the meeting adjourned, it was decided that the date for the next work group meeting would be set after the grant had been submitted.

Although we do not have a formal meeting scheduled, your feedback and ideas are important to us. If you have any questions, or have information that you would like to discuss with Myron or Becky, please contact them at myron.falken@health.state.mn.us (651-215-0877) or becky.bernauer@health.state.mn.us (651-215-0785). Submitted by Barbara Frohnert Edited by Becky Bernauer