Promoting Dignity, Through Data Accuracy, For The Dead

PaulaBraunBy Paula Braun
Twitter: @HHSIDEALab

Obergefell v. Hodges and Mortality Data?
On June 26th, the U.S. Supreme Court struck down same-sex marriage bans nationwide in the Obergefell v. Hodges decision. Thousands of couples waited in line at courthouses across the country and exchanged vows. Millions of people put a rainbow filter over their Facebook profile pictures. The streets of midtown Atlanta, where I live, were filled with people who hugged, danced, and celebrated the ruling. It was incredibly uplifting to be surrounded by so many folks who were truly happy; many of whom claimed they haven’t been so ecstatic in years.

For many, the Court’s decision represents an opportunity to build a life with the ones they love. For others, the end of same-sex discrimination offers a sense of closure and an opportunity to heal old wounds. Widows, such as Jennifer Sisson, who were legally married but lived in states that did not recognize those marriages had limited options before the Court’s ruling. When Sisson’s wife, Pamela Drenner, died after a long battle with cancer, Sisson went to the funeral home to make arrangements and was told, under Georgia Law, their marriage could not be recognized on Drenner’s death certificate. The only options were “never married,” “widowed,” or “divorced.” At the time of Drenner’s death, the certificate read “never married”. Sisson describes her pain in an article featured in The Georgia Voice, “ from that moment in the funeral home, I’ve never felt so alone and just so much against me.”

All information captured on death certificates – such as race, gender, and marital status – matters. In my previous blog post, I wrote about the importance of the cause-of-death fields; however, every element of the certificate is important. Capturing the information timely and accurately is more than just an administrative requirement with public health benefits. It’s an opportunity to provide a sense of closure, maintain dignity, and respect the wishes of those who have departed, which Sisson did not receive at the time of Drenner’s death. During one of the most vulnerable times of intense grief, it’s a simple way to support one another and make the grieving experience just a little bit easier.

The Role of Health Technology (IT)
The Court’s ruling and Drenner’s story caused me to reflect on the importance of my role as an Entrepreneur-in-Residence charged with developing a plan to modernize mortality reporting. Much of my work is about examining the Health Information Technology (IT) landscape, in the context of mortality reporting, and influencing this ecosystem to consider modernized ways of exchanging health information. This Health IT ecosystem is complex, and the Supreme Court case reminded me that IT solutions are multidimensional constructs that are shaped by cultural values.

One way I like to think of Health IT is as a five layered cake, with each layer having different groups of invested individuals.

  • The topmost layer includes policy, program management, and governance considerations. These are the rules and constraints that shape what’s possible. Major paradigm shifts at this level–such as the Court’s ruling–impact everything below.
  • The next layer is the informatics layer; the space where conceptual ideas are formed about how to put technology to work to solve complex problems.
  • Then we move to the bottom three “nuts-and-bolts” layers: applications/software, data interchange, and infrastructure/hardware.

Each of the five layers influences how the data will be collected, stored, processed, and communicated so that information is available at the right time and in the appropriate context for decision makers to take action.

The Opportunities Ahead
There have been major obstacles to the electronic exchange of death information. The current mortality-reporting infrastructure is a largely federated system of systems with shared responsibilities across different organizations: funeral homes, doctors, medical examiners, coroners, government registrars, and public health agencies. In the United States there are 57 independent vital records jurisdictions that register births, deaths, fetal deaths, and marriages. They work diligently to serve their constituents and uphold the laws of the land. When nation-wide changes occur, such as the Supreme Court’s ruling on same-sex marriage, each jurisdiction is responsible for updating their respective systems. In this case, that will involve recognizing same-sex spouses on death certificates nationwide. The next major anticipated change will be when the World Health Organization moves to the 11th edition of the International Classification of Diseases.

Many of the electronic death registration systems in place across the country are already legacy systems, and they are likely to dominate the landscape for years to come. Progress is impaired by the proprietary manner in which the data are collected and stored. Lack of competitive pressure gives little incentive to improve the situation. These are the challenges I face every day as an Entrepreneur-in-Residence. There are days I struggle with the task, but seeing how this issue impacts people’s daily lives inspires me to keep going; everyday, information gleaned from mortality data is used to help save lives by influencing public health interventions, health outcomes research, and health care related policy decisions.

I am optimistic that the vision articulated in ONC’s 10-Year Vision to Achieve an Interoperable Health IT Infrastructure can be achieved despite the major obstacles that currently impede the electronic exchange of health information.

I’m continuing to work with my colleagues across CDC and within the HHS IDEA Lab to explore ways to apply complex data handling techniques and internet-based technologies to promote the development of real-time, integrated mortality reporting. We need systems that allow us break free from the status quo and are open to future innovation.

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About the Author: Paula Braun joined the IDEA Lab in November 2014, as part of the Entrepreneur-in-Residence (EIR) program at the U.S. Department of Health and Human Services (HHS). She is positioned at the Centers for Disease Control and Prevention’s Office of Public Health Scientific Services to help develop a roadmap to modernize electronic death reporting. This is Paula’s third blogpost in this EIR series documenting her project and experience. This article was originally published on HHS Idea Lab and republished here with permission.