Patricia W. Potrzebowski, Ph.D. Executive Director Vital Statistics Registrars and Genealogists: Vital Statistics Registrars and Genealogists: We Need to Talk! Working Together for the Public’s Health Patricia W. Potrzebowski, Ph.D. Executive Director I appreciate the opportunity to talk with you today about vital records and why these records matter to all of us. I’d like to start out by thanking Fred Moss for encouraging me to come here to continue in a larger venue the dialog that he and I have begun through our periodic discussions over the past several years.

Key Topics Areas of concern Vital Records 101 Common goals Why privacy, confidentiality, and security matter Areas of concern Working together Here are the key topics that I’ll be covering today. I know that many of you are very familiar with vital records for genealogical research, but their public health uses are really important, so we’ll talk about that a little bit. Most important, I’d like us to explore what genealogists and state vital records registrars have in common, and how we can continue our dialog to strengthen our potential partnership and achieve mutual goals. I also think it is important in our discussions that we understand what privacy, confidentiality, and security are and why they matter to all of us.

An accurate, timely, and secure record of all vital events in the nation. NAPHSIS is the National Association for Public Health Statistics and Information Systems. Established in 1933, it is the professional nonprofit membership association for the vital records agencies in the United States. Our close to 300 voting members generally work in the 57 vital records agencies, although we do have a few members who are local registrars. All the vital records offices in the states except one are located in state health departments. This slide shows our new logo and tagline and our vision. The bottom line is that everything we do – we do to improve the population’s health and well being.

Vital Records Represent People: Permanent Legal Records of Life Events I’m sure that everyone here knows that vital records are the permanent legal records of life events – births, deaths and fetal deaths, marriages and divorces. But vital records are not just historical or legal documents, they are also the source documents for public health indicators, such as the leading causes of death. Vital records represent people, so the accuracy of the information collected, as well as the privacy, confidentiality, and security of the records are critical.

Responsibility for Vital Records State (not federal) responsibility 57 vital records jurisdictions: 50 states + DC + NYC + 5 territories Jurisdiction where event occurs Not place of residence As you probably know, the legal responsibility for collecting vital records is a state function – not a federal function – and as such, it is governed by state, not federal, statutes and regulations. The reporting of vital events in the US goes back to colonial days but their value as a vehicle for collecting reliable data for public health purposes was recognized much later. Devastating cholera, yellow fever, & typhoid epidemics in the 18th and 19th centuries were the major driving force for initiating vital registration. Since then, the need for vital records data for public health and medical research purposes has increased rapidly. As health and social issues have become more complex, the information content collected on vital records has expanded significantly. Today, the 57 vital records jurisdictions in the United States are the 50 states, New York City (separate from New York State), the District of Columbia, & the 5 territories. Vital events reporting is based on place of occurrence – the location where the birth or death occurred - not on the residence of the decedent or the mother of the newborn. In each of the 57 jurisdictions, all births and deaths are required to be reported to the state registrar of vital records. Fetal deaths are also reported, with reporting requirements varying by jurisdiction based on length of gestation or birth weight. In most jurisdictions marriages and divorces are initially filed at the local level and then reported to the state vital records office.

Public Health and Research Uses Identify risk factors Measure health outcomes Plan/evaluate programs Conduct medical research Calculate natural increase (population growth) So let’s delve into the public health statistical and research uses of vital records. You can’t turn on the radio or the tv without hearing the latest statistics about teen pregnancy rates, the leading causes of death, the rate of C-sections. In fact, you may also have heard something recently about the increase both in fatal prescription drug and heroin overdoses. All of that information comes from vital records. This kind of health surveillance helps our policy makers direct resources and attention to major health issues in our country – so it’s really important that the source documents – vital records - be accurate and complete.

Legal and Administrative Purposes Proof of age, citizenship, parentage Obtain identity documents (passport, DL) Enroll in benefits programs Settle estates & obtain life insurance payouts Terminate benefits (social security, pension)   The second use of vital records – for legal and administrative purposes – includes proof of age, citizenship, or parentage. Birth records are also used to obtain identity documents such as passports and driver’s licenses, and to enroll in benefits programs. Death records are used to settle estates, obtain life insurance payments, and terminate social security, pension, and other benefits.

Other Vital Record Functions Certified copy issuance Amendments and adoptions Paternity acknowledgment Delayed records Statistical reports Record preservation Security – prevent identity theft/fraud In addition to registration of vital events, vital records offices are responsible for several other functions that often compete for resources with data collection efforts. Think about how many times you’ve needed a copy of your birth certificate – or your child’s birth certificate to complete some kind of administrative or legal function. Issuing certified copies is one of the most visible functions of the vital records office. While the state health department cares most about the health and medical data collected from your vital records – it’s the administrative uses that are most associated with vital records. It’s an age-old marketing problem in public health. If it’s working – you don’t even notice that its there.

What do we have in common? We all need…. Accurate Data (reliability and validity) Complete Data (minimize missing information) Preserved Data (archival quality/redundancy), and Data Used in a legal/appropriate way. Let me pose a few questions: When you are doing genealogical research, do you ever get frustrated when the document or record you are looking at is missing critical information? Does it bother you if the information you obtain from two different sources is conflicting? Does that matter to you? Have you answered YES to any of these questions? US TOO! State Registrars want the birth and death records they are responsible for registering to have accurate information and to be complete. They want to be sure that all records are preserved for the future, and they want to ensure that the data they are responsible for collecting are used appropriately. I would take a wild guess and say that genealogists and people who work in vital records are both a bit obsessive about details. I think we both care about many of the same things. And, my sense is that both groups are very committed and enthusiastic about our work.

Why privacy, confidentiality, and security matter to all of us. On the previous slide I referenced appropriate use of data. Why are privacy, confidentiality, and security SO important to us? Each of these words – privacy, confidentiality, and security, means something different. But this terminology is often confused and tends to be misused by many of us, even, I would have to admit, by vital registrars.

Privacy Ability to protect sensitive personal information Individual boundaries differ Sensitive medical information Impact on family members Controlling sensitive information about yourself or a family member is an important personal right in this country. What is considered private varies a lot between cultures and individuals. Medical information about a person is generally considered to be private, and is covered by federal HIPAA regulations. We all want to ensure that our medical records remain private and we each want to control who has access to that sensitive information. In vital records, the medical portion of the birth record is generally considered to be confidential and it does not appear on the certified birth certificate. Sometimes the cause of death may be an embarrassing one – like a death due to an STD, alcohol, drug overdose, or suicide. When the public health data from vital records are used at the national, state and local levels they are aggregated and special care is taken so that individuals cannot be identified in any particular population. But on an individual basis, the family may be adamant about concealing the true cause of death. We’ll talk more about this in a minute.

Confidentiality Data access agreement between data collector and data provider Requirement for accurate reporting Identify and track progress on public health problems Confidentiality means ensuring that personally identifiable information is available only to those authorized to have access according to the agreement between the data collector and the data provider. If you’re not absolutely certain that a record will be kept confidential – you will be a lot less likely to provide accurate data. As a result, there may be underreporting by physicians of critical public health problems. We know that THIS HAPPENS ALL THE TIME, especially for sensitive causes of death like HIV/AIDS . The result is inaccurate data – not only at the state and national level – but for the family members as well. As you know, this can have serious implications if the misreported underlying or contributory cause of death is a genetic disease or condition. Another example is a recent study that found serious underreporting of alcohol involvement on death certificates for motor vehicle crash fatalities. The extent of underreporting varied by state. Knowing the magnitude of the problem is a necessary first step if we want to prevent these tragic deaths.

Security Protection from unauthorized use, access, disclosure, disruption, perusal, modification, or destruction Breeder documents Identity theft Terrorism Let’s talk about unauthorized or illegal uses of vital records data. It seems like there’s a new story on identity theft every week now that so much of our lives take place online. That’s why it’s so important for vital records offices to mark birth records deceased. And it also explains why vital registrars are very careful about who may obtain a certified copy of a birth or death record. Identity theft can occur even after a person’s death. Alexis Agin died of a brain tumor at age 4. Soon after her death her identity was stolen and used to file a fraudulent tax return. We have learned that criminals cruise websites erected to support children with life threatening illnesses & wait for them to die so that they can commit fraud. They take advantage of that short window of time between a child’s death & when the birth record is marked deceased to commit heinous crimes. They find the social security number – and off they go. Another example: Many of the 9-11 hijackers had Virginia & other state issued driver’s licenses, obtained without proof that they were legal residents. This form of identity fraud allowed terrorists to destroy the World Trade Center towers, the Pentagon, kill thousands of people, and leave wounds in this country that will never fully heal. <pause> The Real ID Act requires that persons applying for a drivers license who claim US citizenship prove it, which they usually do with a birth certificate – and it came about because of the 9-11 tragedy. In addition, the Intelligence Reform Terrorism and Prevention Act addresses the importance of security standards for birth records to prevent terrorism and fraud.

Protecting Personal Identity EVVE (Electronic Verification of Vital Events) STEVE (State & Territorial Exchange of Vital Events) ADAM (Automated DMV Authentication Module) NAPHSIS and its members employ a number of electronic systems to provide access by legitimate users to vital records data without compromising personal identity. These include EVVE, STEVE, and ADAM. Through these systems, NAPHSIS helps to bridge the gap between people who want access to the data - the data users, and people whose job it is to protect the data. I don’t have time today to talk about all of these systems, but I do want to mention that later this year, the EVVE system will become available to government and non-government entities that have an established administrative need for identifying if a person is deceased. The EVVE system will provide a much more comprehensive alternative to the public Death Master File, which does not contain a complete set of deaths that have occurred in the United States.

SSA Death Master File What happened to the DMF? As you know, the Social Security Administration’s public death master file or DMF includes deaths reported to SSA, but these deaths are not necessarily verified. As such, it is both incomplete and inaccurate – it includes living persons who were mistakenly reported as dead. In addition, not all deceased persons are included. Between 2002 and 2011, SSA included death records in the DMF that had been obtained under contract with the states. This was a very large and public mistake – and SSA voluntarily removed the records. Anyone who was used to using the DMF was pretty upset about this and called on Congress to pass legislation restoring state death records to the public DMF. However, since vital registration is a state rather than a federal function, no direct federal action is possible under the constitution. Also, as you know last December Congress directed that users wishing to access the public DMF in the first three years after the date of death first be certified by NTIS. Because the state death records are no longer part of the public DMF, the state registrars and NAPHSIS have not been involved with or taken a position on this issue.

Model State Vital Statistics Act 1907 - updated 1942, 1959, 1977, 1992, 2011 Purpose – state guidance, promote best practices Not a “Uniform Act” - state practices vary 2011 revision – new technology, post 9-11 concerns Let’s talk about another sticky issue: the Model Law. The 2011 revision of the model vital statistics act, as well as the previous 1977 and 1992 revisions, have caused concern among genealogists, particularly the issue of how long vital records remain “closed.” Technology has changed a lot since 1992. In some states, vital records offices are now completely electronic and paperless. But for our vital records offices – it’s all about protecting personal identity. People are living longer, and the elderly are particularly vulnerable to identity theft. As a result, the 2011 revision proposed increasing the length of time that birth records would remain confidential from 100 years, as in the previous 1977 and 1992 revisions to 125 years. For death, the proposed change was from 50 years to 75 years, and for marriage and divorce records, the proposed change was from 50 to 100 years before the records are made publicly accessible. I know that these proposed changes are not popular with many of you, but remember that this is a Model – not a Uniform – Act. It is expected that each state may make changes, based on individual state preferences. This means that there is an opportunity for you to talk with your State Vital Registrar about any plans he or she may have for moving forward to revise their existing state statutes.

Identify Mutual Goals Accurate and complete information Record preservation Adequate resources Infrastructure improvements The key is to build a relationship, to learn about each other so that you can be mutual advocates for each other. Genealogists and state vital registrars have a LOT in common. And vital records offices need all the champions they can get. They’re understaffed, underfunded, and the electronic systems are expensive to maintain and become obsolete very quickly. Getting accurate data from physicians, birth clerks, funeral directors, coroners and medical examiners is HARD and providing that education and one-on-one service takes a huge amount of effort. Record preservation is another critical function that is sometimes postponed due to inadequate resources. Most folks assume that the records will always be there – but with increasing pressure from BIG DATA and Health Information Exchanges – that may not always be the case.

Best Practices for Partnership Realistic expectations Professionalism Common ground Now let’s be frank. I know that there may be other parts of the model law that you might not like. So how can a State Registrar & Genealogist work together when they disagree on an issue? Well, now that you know more about the State Registrar’s point of view, you can work to create a mutual understanding of all the myriad issues at hand. We’re all just trying to do our jobs to the best of our ability. We’re all trying to meet the needs of our customers with limited resources and limited hours in the day. And we’re all trying to make this world a better place. The first step is opening the lines of communication. Get to know your Registrar and actively seek common goals to accomplish TOGETHER. You may find that the Registrar in turn will better understand your needs and be willing to work with you to help accomplish them.

The first step is often being a good listener. Thank you for listening to me! The first step to improved communications is often being a good listener, so I want to thank all of you for listening to me. I hope that you now have a better understanding of how vital records are used for public health purposes and that I have identified some interests that state registrars and genealogists have in common. And finally, I encourage you to reach out to your state registrar to learn more from him or her and to begin the process of developing a mutually beneficial professional relationship. Again, thank you!

Questions? Do we have time for questions? Are there any questions?

Patricia W. Potrzebowski, Ph.D., Executive Director 962 Wayne Avenue, Suite 701 Silver Spring, MD 20910 301-563-6001 ppotrzebowski@naphsis.org www.naphsis.org Here is my contact information and I’d like to encourage anyone who has questions or would like to talk with me about any of the ideas I‘ve shared today to please contact me.