Over the past few years a crisis has been brewing in the American healthcare system. Providers across all healthcare fields are inundated with daunting amounts of paperwork, where hours are spent filing, reporting, and distributing information to different payers and regulators at the federal, state, and local levels. Providers may also be asked to submit similar, if not the same, reports and data related to patient care to professional societies, industry watch groups, and others. This overwhelming and time-consuming paperwork and reporting needs must be addressed before the provider can even begin considering what information will best serve the patient. Resulting from these requirements is a devastating burden on individual providers and the healthcare system overall. Healthcare professionals are increasingly overwhelmed with administrative work, potentially impacting the quality of care they are able to provide. In addition to its costs, this places a heavy emotional burden on clinicians at all levels of the US healthcare system.
The United Nations Take on Health Data
In September 2015, the United Nations, working under the auspices of the 2030 Agenda for Sustainable Development, issued 17 goals for Sustainable Development. Goal #3 addresses sustainable Health practices and includes 13 healthcare targets to assess the health posture of a nation, as well as 26 indicators that measure the nation’s progress towards the target. The targets and their indicators appear in Appendix A.
While this UN-sanctioned list of indicators may not be complete, it is at least a good baseline for reporting healthcare data and trends and has been agreed to by at least a majority of the world’s countries. We suggest developing a standard reporting mechanism for these health indicators. The benefits to national healthcare sectors and global, sustainable population health can be enormous. The reporting of consistent data would enable better visibility into what is happening both within healthcare systems as well as at the point-of-care. It will become easier to understand what is working and what isn’t working at a national level, as well as within regions and within individual hospital systems and possibly even more granularly.
And with standardization, data sharing across health systems globally becomes easier – meaning lessons learned and best practices will be easier to share across the world. Once we are made aware of what is working in one area of healthcare, the transfer and adoption of those techniques into other parts of the world or other areas of healthcare become simplified. The broader and wider adoption of successful healthcare practices will reduce adverse outcomes and improve patient care worldwide.
Having standardized data from around the world means the accuracy of reported health data can improve allowing offering greater confidence in the insights the data is telling us. The implementation of standardize reporting for health indicators will also likely make it easier to report, decrease the reporting burden on providers – freeing more time for patient care.
An Example: Maternal Mortality
Maternal mortality is a significant public health issue and a strong indicator of a nation’s health status both nationally and internationally. The death of a mother has lasting consequences on family members and the larger society, ultimately representing one of the largest failures of a nation. The U.S. leads the developed world in its rates of both maternal and infant mortality. One of the issues the U.S. faces in its efforts in improving maternal care is the quality of data surrounding the incidents of maternal and infant mortality in the first place. The U.S National Vital Statistics System (NVSS) is the source of official maternal mortality statistics used for both subnational and international comparisons. However, this database utilizes statistics for which there is no gold standard in how death records are reported or collected.
Until the early 1990s, there was no systematic way to collect maternal mortality data in the country. Pregnancy-related deaths classifications were limited to narrow classification listed on death certificates at the time, i.e. complications of pregnancy, childbirth, and the puerperium. The certificates used by states collected no information on whether a woman was pregnant at the time of death or had recently given birth. This means that the deaths which occurred during pregnancy for non-obstetric causes, like, high blood pressure or depression, as well as those that happen after birth, were not counted as maternal related deaths under local level reporting.
Death registration is based on state law where death certificates are filed and maintained in the state vital statistics offices. The states have recommended the use of the U.S. Standard Certificate of Death, which is revised once every 10 years in collaboration with states, NCHS, and other federal agencies and subject matter experts. However, each state issues its own death certificate. States like West Virginia didn’t even introduce a pregnancy classification on their death certificates until 2017.
U.S. states continue to have different mechanisms for reporting maternal deaths. The very information on the death certificate is provided by two groups of persons: 1) the certifying physician, medical examiner, or coroner and 2) the funeral director. The cause of death, critical in understanding and responding to maternal and infant mortality, is supplied by either the certifying physician, the medical examiner, or the coroner.
However, state-by-state data is reviewed by Maternal Mortality Review Committees (MMRCs)—review groups in only around half of U.S states. Their role is to filter through the death certificates to determine if the cause of death is pregnancy or child-birth related, at times without access to the patient’s complete medical record. Each state then sends their statistics to the Centers for Disease Control and Prevention (CDC), who produce and release national-level data, after their own epidemiologists review the data to assess cause of death. While the review committee is a great step towards ensuring quality control, the official CDC data are not updated to reflect the findings of the committees, which means the national numbers on record aren’t just likely to be inaccurate—they are known to be wrong. Additionally, copies of the matching birth and fetal death certificates are sent – if they can be matched.
Producing reliable data on maternal mortality should not be an issue considering growths in the field of technology and healthcare. Yet for some reason, quality assurance and reporting methodologies remain a challenge. When conducting a review of the literature, we find that there is no consensus in reported death rates on a national-level, with the reported range being quite large. The U.S. maternal mortality rate is anywhere between 16 to 26.5 maternal deaths per 100,000 live births. Failure in producing an official maternal mortality rate stunts prevention efforts.
The U.S shares its reporting challenges with Mexico, a country where misclassification of the cause of death is a major component of the maternal mortality problem. In fact, in Mexico, no single number exists for its maternal mortality rate. Because of the inconsistencies in reporting, the rate is a range, as shown in Figure 1 below. It is no coincidence that the United States parallels Mexico’s maternal mortality rates.
Figure 1. Maternal deaths in Mexico.
The different reporting methods and standards make challenging – impossible – integrating all reported data to develop one concise, accurate view of Maternal mortality or any health indicator. This makes it impossible to learn the posture of the overall health & wellbeing of a nation. If the United Nations Sustainable Development goals are to be successful, a necessary start would be to have a detailed and universally consistent reporting on the medical conditions underlying the indicators.
Currently, without a universal standard for reporting, healthcare systems lack in uniformity with respect to reporting requirements. This can lead to challenges in patient care, confusion in expectations, the inability to communicate lessons learned and adopt best practices, which can lead to decreased national health posture. This can be easily seen through Maternal Mortality reporting, as the process of reporting deaths is significantly different, between and within countries.
An Alternative Approach
An ideal alternative is to develop a GML-based spatial data infrastructure for health data that will standardize the semantics and definitions of all the data being captured and reported. This will facilitate both integration of data from different sources and comparison of results reported from different health systems and nations.
A spatial data infrastructure will also allow the health data to be easily mapped – and layered against social determinants of health, including but not limited to population density, education, income, transportation, environmental factors, climate change, and a variety of other factors. In addition, an SDI will enable the inclusion of new data sources that currently aren’t considered when analyzing health outcomes, such as environmental sensors, smart city sensors, and satellite data. This will allow more data and more diverse data to be brought to bear on health data analytics that was previously possible – leading to more comprehensive research into and discovery of both the root causes and solutions to adverse outcomes that plague our global community.
If the reporting system in the United Stated utilized a GML-based Health Spatial Data Infrastructure (Health SDI), which is streamlined and can be consistent globally, there would be more shared information between providers, states, healthcare agencies, and nations. With a streamlined reporting system and open portal for providers, healthcare professionals can better assess any trends in maternal death – at any level between local, regional, and global – which might require specific interventions to decrease any future deaths. Such a system would greatly simplify the ability to determine root causes for differences in outcomes. Furthermore, providers would be able to see positive results from other facilities that may be down the street over overseas, allowing for adoption of innovate and successful medical practices. Coupled with the GML approach, our proposed data collection approach will enable geospatial analytics and visualizations of health indicators and overall health state of each region, country, or world.
With the GML approach, as information on what is happening is disseminated more quickly, providers and healthcare systems may more quickly be able to identify at risk patients leading to improved interventions and outcomes. And as challenges in the process for reporting are reduced, more of the providers’ time can be freed to spend with patients. Patient care would improve through the information gathered and, as such, the overall health of nation and global population health would improve. The Health SDI proves ideal for a successful reporting method, as its benefits flow throughout all levels of the healthcare field. We ask that you consider supporting the OGC Health DWG in our efforts to develop a Health SDI and the associated standards for the health indicators included in the UN’s Sustainable Development Goals for Health.
Appendix A – United National Global Health Indicators for Sustainable Development
In September 2015, the United Nations, working under the auspices of the 2030 Agenda for Sustainable Development, issued 17 goals for Sustainable Development. Goal #3 addresses sustainable Health practices and includes 13 healthcare targets to assess the health posture of a nation, as well as 26 indicators that measure the nation’s progress towards the target. The targets (3.x) and their indicators (3.x.x) appear online as well as below.
Goal 3. Ensure healthy lives and promote well-being for all at all ages.
3.1 By 2030, reduce the global maternal mortality ratio to less than 70 per 100,000 live births.
3.1.1. Maternal mortality ratio.
3.1.2. Proportion of births attended by skilled health personnel.
3.2 By 2030, end preventable deaths of newborns and children under 5 years of age, with all countries aiming to reduce neonatal mortality to at least as low as 12 per 1,000 live births and under-5 mortality to at least as low as 25 per 1,000 live births.
3.2.1. Under-five mortality rate.
3.2.2. Neonatal mortality rate.
3.3 By 2030, end the epidemics of AIDS, tuberculosis, malaria and neglected tropical diseases and combat hepatitis, water-borne diseases and other communicable diseases.
3.3.1. Number of new HIV infections per 1,000 uninfected population, by sex, age and key populations.
3.3.2. Tuberculosis incidence per 1,000 population.
3.3.3. Malaria incidence per 1,000 population.
3.3.4. Hepatitis B incidence per 100,000 population.
3.3.5. Number of people requiring interventions against neglected tropical diseases.
3.4 By 2030, reduce by one third premature mortality from non-communicable diseases through prevention and treatment and promote mental health and well-being.
3.4.1. Mortality rate attributed to cardiovascular disease, cancer, diabetes or chronic respiratory disease.
3.4.2. Suicide mortality rate.
3.5 Strengthen the prevention and treatment of substance abuse, including narcotic drug abuse and harmful use of alcohol.
3.5.1. Coverage of treatment interventions (pharmacological, psychosocial and rehabilitation and aftercare services) for substance use disorders.
3.5.2. Harmful use of alcohol, defined according to the national context as alcohol per capita consumption (aged 15 years and older) within a calendar year in litres of pure alcohol.
3.6 By 2020, halve the number of global deaths and injuries from road traffic accidents.
3.6.1. Death rate due to road traffic injuries.
3.7 By 2030, ensure universal access to sexual and reproductive health-care services, including for family planning, information and education, and the integration of reproductive health into national strategies and programmes.
3.7.1. Proportion of women of reproductive age (aged 15-49 years) who have their need for family planning satisfied with modern methods.
3.7.2. Adolescent birth rate (aged 10-14 years; aged 15-19 years) per 1,000 women in that age group.
3.8 Achieve universal health coverage, including financial risk protection, access to quality essential health-care services and access to safe, effective, quality and affordable essential medicines and vaccines for all.
3.8.1. Coverage of essential health services (defined as the average coverage of essential services based on tracer interventions that include reproductive, maternal, newborn and child health, infectious diseases, non-communicable diseases and service capacity and access, among the general and the most disadvantaged population).
3.8.2. Proportion of population with large household expenditures on health as a share of total household expenditure or income.
3.9 By 2030, substantially reduce the number of deaths and illnesses from hazardous chemicals and air, water and soil pollution and contamination.
3.9.1. Mortality rate attributed to household and ambient air pollution.
3.9.2. Mortality rate attributed to unsafe water, unsafe sanitation and lack of hygiene (exposure to unsafe Water, Sanitation and Hygiene for All (WASH) services).
3.9.3. Mortality rate attributed to unintentional poisoning.
3.A Strengthen the implementation of the World Health Organization Framework Convention on Tobacco Control in all countries, as appropriate.
3.A.1. Age-standardized prevalence of current tobacco use among persons aged 15 years and older.
3.B Support the research and development of vaccines and medicines for the communicable and noncommunicable diseases that primarily affect developing countries, provide access to affordable essential medicines and vaccines, in accordance with the Doha Declaration on the TRIPS Agreement and Public Health, which affirms the right of developing countries to use to the full the provisions in the Agreement on Trade Related Aspects of Intellectual Property Rights regarding flexibilities to protect public health, and, in particular, provide access to medicines for all.
3.B.1. Proportion of the population with access to affordable medicines and vaccines on a sustainable basis.
3.B.2. Total net official development assistance to medical research and basic health sectors.
3.C Substantially increase health financing and the recruitment, development, training and retention of the health workforce in developing countries, especially in least developed countries and small island developing States.
3.C.1. Health worker density and distribution.
3.D Strengthen the capacity of all countries, in particular developing countries, for early warning, risk reduction and management of national and global health risks.
3.D.1. International Health Regulations (IHR) capacity and health emergency preparedness.