Perinatal Health/ State Infant Mortality Collaborative Meeting

Paul Rizzo Conference Center, Chapel Hill

November 30, 2005

5:00 pm - 7:00 pm

Present

Sydney Atkinson, Selena Berrier, Anna Bess Brown, Paul Buescher, Robert Cefalo, Carol Coulson, Karla Damus, Janice Freedman, Melissa Godwin, Joe Holliday, Hytham Imseis, William Lawrence, Mary Linker, Gerri Mattson, Cathy Melvin, Ken Moise, Tim Monroe, Belinda Pettiford, Senator William Purcell, Susan Robinson, Marcia Roth, Susan Schulte, Sarah Verbiest, Tom Vitaglione, Lydia Wright, and Patricia Yancey

Welcome and Introductions

Sarah Verbiest (Chair, Perinatal Health Committee) and Joe Holliday (co-Chair, State Infant Mortality Collaborative) asked participants to introduce themselves.

The members of the NC Child Fatality Task Force’s Perinatal Health committee as well as members of the State Infant Mortality Collaborative (many serve on both groups) have been working hard this fall to analyze data and prepare to make recommendations to the Child Fatality Task Force for its 2006 legislative agenda.

The purpose of this meeting is to review and discuss the preliminary recommendations, keeping in mind that there is still time and “room on the agenda” for additional recommendations.

Special thanks to Karla Damus, joining us from the national March of Dimes, who will share her experiences working on infant mortality across the country, and in particular in New York City. Sarah and Joe thanked the March of Dimes and Glaxo Smith Kline for sponsoring the evening.

Recommendations/Discussion

1.  Prevention of Recurring Preterm Birth

What can we do to help women at risk for a second preterm birth? Early births continue to be on the rise in North Carolina and across the country along with infant mortality. The disparity in preterm birth rates between Caucasian Americans and African Americans continues to be more than two fold with prematurity being the leading cause of infant mortality for African American babies. There is no single “silver bullet” for prevention.

Women who have had a previous preterm birth are at greater risk for future preterm births. When a woman is pregnant, health care providers focus on her, but when the baby is born, the focus generally shifts to the child. There are many things that women can do between pregnancies to prevent a second preterm birth, but our health care system does not always provide adequate and timely information to her. By the time the woman is pregnant a second time and seen by a health care provider, it is often too late to put important prevention efforts in place. The group discussed several contributing factors:

1. The group recognized that neonatal health care providers are already stretched, but also discussed the important role those providers have in preventing preterm births. Women who have had a high-risk pregnancy or poor birth outcome should be given prevention information before they are discharged from the hospital by both their OB and their baby’s provider. What is the role of pediatrics in prematurity prevention?

2. There are some specific areas for intervention that we know will improve outcomes for infants such as the smoking cessation, control of diabetes and high blood pressure, adequate birth spacing and folic acid. There is an important new drug, 17-P, which is relatively inexpensive (about $30/month) and could help prevent preterm births for a subset of at-risk women. If used with the correct group of women who had a previous preterm birth, it could reduce their risk by about 40% for a recurring preterm birth. Currently, 17-P is being reviewed by the FDA for approval for use for this purpose. Progesterone is commonly used in pregnancy and considered safe.
3. Perceptions of prematurity may vary among women often depending on the health of their preterm baby, and her pregnancy experience. Other challenges in providing women with needed interconception (between pregnancy) care include health care costs, system miscommunication/gaps and a need to engage women in addressing their health needs even while caring for a high-risk infant.
4. There are other providers (outside of the hospital) who may be working with new moms and may be able to provide prevention information. These people include: public health providers, social workers, nurses, breastfeeding coaches etc.  Ideally, we would create a team approach to supporting mothers post partum and beyond.

Ideas for action:

• We need to encourage all health professionals who work with high-risk moms to provide information about interconceptional care and make referrals as needed
• Child Service Coordinator and Maternal Care Coordinator services are two possible ways to reach mothers with interconception health messages and provide support to reach personal health goals. However, there are currently cost and policy restrictions on CSCs regarding the provision of health education to families. MCCs in the Baby Love Plus Counties are providing longer follow up services to these mothers.
• Review the IHI community-based AIDS education model, and think about how we could replicate that in our communities, especially our rural communities where health care providers might not be as connected to hospitals
• Keep “the voice of the woman” at the table by continuing to pay attention to what the focus groups taught us about barriers to health care
• Write an article on this topic for the NC Medical Journal
• Co-locate pediatric and women’s health care providers to facilitate access
• Think about involving fathers...all our discussion centered around moms and babies, we can’t forget that father education is important too
• Review existing service system interfaces to better understand how women may fall out of the system, their needs and how to improve services. A pilot project looking at a medical home initiative for high-risk mothers so as to provide additional medical and mental health to address the conditions that would put her future offspring at risk.

2.  Reduction of Disparity in Infant Mortality

Health disparities are a serious issue in NC. While most of the figures look grim, there are a few counties that have seen a reduction in disparity rates. We need to look at those communities and see what they are doing well, and help other counties do the same.

Institutional discrimination in the health care system is an important issue. Public health needs to start pushing the envelope about racial disparity by looking closely at community structures (such as the development of roads, businesses, neighborhoods, etc) and social equity. Addressing these disparities is difficult because conversation can end up in ideological discussions (ex: redistribution of wealth). However, health disparities are measurable outcomes of racism/injustice and, as such, the topic must be addressed, even if it is difficult. If we continue to treat only individuals we are not going to make headway on these issues.

How do we solve this problem? In Forsyth County, a health summit was convened that focused on three issues: preventable disease, obesity, and racial disparity. They decided to focus on making public policy recommendations to reduce disparities (ex: advocating for a “living” minimum wage as poverty is a clear indicator of health). The Forsyth County Health Department also wants to see a Public Health Advisory function incorporated into city/county/commercial planning in order to pursue social equity and environmental justice. There is a growing agreement in public health that more dialogue within our communities is needed if we expect to make real headway in reducing disparities.

The spring 2005 SIM focus group data revealed that many minority and low-income recipients of health care believe that they are discriminated against by health care providers and health systems.  Both Forsyth and Chatham counties have invested in cultural competence training experiences for their workers, which has been helpful and successful. They remind or teach participants that their world-view influences how they treat others. Part of the process includes looking at institution systems and trying to address areas where change is needed. Unfortunately, the trainings are expensive, and more money for training is needed. Chatham uses “Dismantling Racism Works” and Forsyth uses “Crossroads Ministries.”

Ideas for action:

• If a county is doing well, give them a sign they can post—something they can display to show their pride and success.
• Minnesota has an excellent manual on cultural competency; it would be great if NC had something similar.  
• We should look at existing/emerging public health models and decide what we can do to incrementally address the issues of cultural competence, racism, classism, and other issues leading to disparities.
• We need to carry the message about health disparities to our national leaders. NC is always seen as far behind other states in funding public health, but it’s not just public health, we’re behind in most economic areas compared to the nation.
• The Secretary of Health and Human Services has formed a cultural competency group, and we should learn more about their activities. Initiatives looking at raising awareness among health care systems and others should be coordinated some with this effort.
• The Division of Mental Health, Developmental Disabilities and Substance Abuse Services is developing cultural competence guidelines. The Division of Social Services is partnering with Mental Health to develop a blended, in-depth training linked to preservice (the required training for new DSS workers) about cultural competency. Schools and Mental Health have been working together to try a high-school program.  
• The Office of Minority Health and Health Disparities is currently considering awards for funding local health disparity projects. The NC Health and Wellness Trust Fund will be doing the same.

3.  Increase funding for the Back to Sleep and Safe Sleep Campaign

In NC, the child unintentional suffocation/strangulation rates have doubled over the past year. This rate change is statistically significant. Sarah Verbiest organized a meeting with state leaders around SIDS reduction and safe sleeping. The group discussed the somewhat controversial new American Association of Pediatrics guidelines for safe sleeping, and as a group decided that it is important to focus our efforts on raising awareness of best infant sleep practices during the first three months of an infant’s life.  

Ideas for action:

• We need to recognize the successes we have had. The law that requires childcare providers to place children on their backs for sleeping has made a difference.  We have trained over 30,000 childcare providers on this policy. One major risk for infants occurs when a baby who is normally placed on his/her back to sleep is placed on his/her stomach by a caregiver who is unaware of the Back to Sleep message.
• Changing policy is “free” - are there other policy changes (like the child care requirement) that we can implement? This might be challenging as this focuses on modifying personal behavior within the home and might have ethical problems.
• The Back to Sleep campaign has at the most had about $20K to spend/year on awareness. This is not enough to reach all the groups who need attention including: grandparents, non-licensed childcare providers, babysitters and others. It is also important that as we think about our approach we include some elements that will show immediate success, as well as long-term efforts.
• Train service groups (like high school honor societies) to provide Back to Sleep awareness
  • Work with hospitals to improve the services to new/at-risk moms and babies. Hospital newborn and critical care nurseries could be doing a better job educating and modeling safe back to sleep practices.
  • What about involving industry? Printing “this end up” on the front of diapers, or “back to sleep” messages?  Having information attached to cribs, etc. Many of these ideas are very important but they will require staff time and educational materials to coordinate and implement.
  • Whatever messages we develop should include information beyond “don’t do it” For example, if we tell moms not to smoke, and that’s our only message, and they decide to smoke anyway, they won’t have any information about safer smoking practices (such as smoking outside and changing their clothes afterwards). We need to think about whether our message should be “do not co-sleep” or “co-sleeping increases dangers, but if you’re going to do it, here are some ideas for how to do it more safely.”
  • Use the 2006 Child Fatality Task Force press conference as an opportunity to raise awareness about safe sleep practices.

4.  Fetal Alcohol Syndrome/ Fetal Alcohol Effect

In NC we have done very little to prevent FAS/FAE, conditions which are 100% preventable.  FAS is linked to a higher risk of SIDS among many other problems include mental retardation.  The Division of Mental Health/Developmental Disabilities/Substance Abuse Services is willing to take the lead on moving forward with prevention messages and has support from national centers and clearinghouses to do so.

Ideas for action:

• Public education regarding the prevention of FASD and SIDS and reduce infant mortality
  • Integrate best practice into the field beginning with consistent use of an evidenced based universal screening tool/protocol
• Promote prevention programs for pregnant women using substances, especially alcohol and tobacco.
• Learn more about the “Olds Model”
• Review domestic violence and well-being studies that have yet to be released
  • Review more closely the recommendations submitted by Susan Robinson and Melissa Godwin – most of which did not have a cost attached.
  • Improve awareness about the ongoing need to address substance abuse in pregnancy among health care providers and infant mortality/morbidity coalitions. Providers can’t pretend that this issue does not still occur with frequency.

5.  Data collection

Qualitative data is very important as it allows researchers and policy makers to better understand the meanings behind the numbers. A clearinghouse of qualitative information in North Carolina, particularly around mothers and families would be valuable. Baby Love Plus data has some strong qualitative work as to fetal infant mortality reviews.

It was brought to the group’s attention that North Carolina has an often overlooked source of information about infant fatalities in the data collected by the counties during child fatality reviews. The Community Child Protection Teams (which review child maltreatment deaths) and the Local Child Fatality Prevention Teams (which review all “additional” deaths) have gathered much information over the years that could be useful to policy decision-making. Dr. Edith Kocis, Medical Director of the State Child Fatality Prevention Team, noted that the local recommendations are often focused on systems issues, but would like to utilize more than just that information, we need to better access the results of those reviews.  

There was discussion about the possibility of creating risk profiles for preterm birth / infant mortality. Tim Monroe gave the example that in Forsyth County preterm birth numbers are small, even though risk profile is high. Their county (as do the other child fatality reviews) overlooks deaths due to extreme prematurity. Perhaps there might be some ways to better identify the women who are at extremely high risk, by looking in depth at those child fatalities. More thought should be given to the work the teams are doing and how it might be expanded or better incorporated into general policy making.

Ideas for action:

• Developing a review tool to capture useful data from child fatality reviews. This system should be web-based and easily accessible. The Medical Examiner’s Office has been working on a standardized protocol of death scene investigations. It is being piloted is two counties, with plans for a statewide roll out.  
• More information about the local child fatality reviews should be made available to the Task Force and its committees.

Final Thoughts

Sarah Verbiest brought everyone’s attention to the list of endorsements being suggested. She asked that people review that list and offer any ideas for additions/subtractions via email.

The perinatal health committee may want to collaborate with the new health care subcommittee in the House to give some preliminary presentations about infant mortality/morbidity in North Carolina.  

Senator Purcell suggested bundling some of these possible legislative requests into one focused effort. This would be useful and would make it easier to work on one large bill instead of multiple smaller efforts.

Next steps including, distributing the minutes for more feedback, pulling together volunteer groups to work on further developing key ideas and preparing for an initial presentation to the Child Fatality Task Force at the end of January 2006.

IT’S NOT TOO LATE TO SHARE OTHER IDEAS FOR LEGISLATIVE AGENDA RECOMMENDATIONS.  Send your thoughts to Sarah Verbiest and/or Joe Holliday.

Minutes prepared by Selena Berrier and Sarah Verbiest