Start with this new piece of information: the U.S. Centers for Disease Control and Prevention (CDC) just announced that it is cutting off funding used to prevent infectious-disease and epidemics in 39 foreign countries. According to the Wall Street Journal, $582 million in funds designated for work with countries around the globe after the Ebola crisis in 2014 and 2015 will run out at the end of fiscal 2019.
That decision is, in two words, shocking and incredible. As a general matter, public health disasters are not stopping at country borders and certain outbreaks of epidemic diseases once thought controlled will be re-emerging. The impact of the CDCs decision takes on added significance in the context of natural disasters, ratcheting up the likelihood of diseases occurring and spreading.
Ironically, as these CDC cuts take hold, they stand in contrast to the growing efforts to use existing and newly developing health information technology for both disaster planning and disaster responses. We are confronted, then, with conflicting policies, attitudes and actions with respect to the health and well-being of those who inhabit our shared world.
By way of example, at the December 2017 annual meeting of the United States Department of Health and Human Services (HHS) Office of the National Coordinator for Health IT (ONC), there was an initial review of existing and improving efforts on how to make electronic health information systems available to Americans. Thereafter, with the growing national disasters in the US and beyond, the usefulness of eHealth solutions to save lives in natural disasters was explored in detail. Coordination of government and private sector e-Health efforts in US disaster regions were described, most particularly technological interfaces between hospitals and first responders. There was general consensus that we have growing capacities to help individuals, and with each disaster, our technological efforts improve.
But, for reasons both explicable and inexplicable, we are remarkably slow at moving to actual, timely implementation. The challenges confronting the population of Puerto Rico post-hurricane Maria are a case in point. Luis Belen, the leader of the National Health IT Collaborative for the Underserved (NHIT), described his professional and personal challenges in helping those in Puerto Rico at the December meeting. Luis, who grew up in a walk-up apartment building in New York City in a Puerto Rican family, had spent his early career helping NYC address drug wars and poverty; he then found himself in the center of national policy and planning for using advanced and emerging health IT designed to reach the populations affected by some of the world’s worst natural disasters.
Yet, despite his professional expertise, Luis struggled to help those stranded in Puerto Rico due to Hurricane Maria, including members of his own family. To personalize the story and showcase the challenges, one of his relatives died due to the unavailability of healthcare for chronic conditions, while a second died in result of a cardiac condition for which no proper health services or health IT tools were accessible related to the storm event. It is ironic and sad that the person trying to help could not save his own family members.
Stated most simply, the current challenges to population health from natural disasters has outstripped the capabilities of nations around the globe to respond adequately to emergencies and to bounce back to wellness with all deliberate speed. Breakthrough interoperable health IT innovations are not being made available to populations in need and we are not testing out new technologies quickly nor considering adoption of blockchain mechanisms that can also contribute to overcoming barriers to more effective use information in healthcare delivery with trust and security. (More on the potential uses of blockchain in emergencies in particular and healthcare more generally in Part II). I suspect that our healthcare failures have also been exacerbated by people’s incapacities to communicate effectively their own health data, receive quality healthcare in the first instance and engage with quality health services and providers.
Given the plethora of global disasters, we do not have time to wait. And the CDC cutback only exacerbates an already difficult situation. Look at these data.
We lament the destructions and deaths of devastating hurricanes (Harvey, Irma and Maria) that wiped out whole national and regional infrastructures across the Caribbean islands, the Florida peninsula and the Texas coastline. Monsoon floods have affected millions in South Asia, while mudslides and flooding near Sierra Leone's capital have killed hundreds.
Add to that that there has been an increase in the number of dengue cases in Sri Lanka this year. Since January until 7 July 2017, as many as 82,543 dengue cases, including 250 deaths, have been reported by the Ministry of Health, Nutrition and Indigenous Medicine. The number of cases this year is three-and-a-half times more than the average number of cases for the same period between 2010 and 2016.
Refugees from Bangladesh died after a monsoon rain caused devastation in parts of India, Bangladesh and Nepal, killing more than 1,200 people this summer. Aid agencies called the floods one of the worst regional humanitarian crises in years with more than 40 million people affected. At least 312 people were killed and more than 2,000 left homeless when heavy flooding and landslides hit Sierra Leone’s capital. A magnitude 7.1 earthquake shocked Mexico on September 20, 2017, killing more than 200 people. In Ethiopia, 348 cases of measles had been confirmed and 40 outbreaks reported in Addis Ababa, Afar, Amhara, Oromia, Southern Nations Nationalities and Peoples, Somali and Tigray regions, as of 31 March 2017. The majority of the cases (39 per cent) have occurred among children under five years.
The 2017 hurricane season has been, to say the least, punishing. First, Puerto Rico was hit by hurricane Irma, a huge Category 5 storm whose eye passed just north. That storm — which had ravaged several Caribbean islands in its path— left 1 million people without utilities on Puerto Rico. By the time Hurricane Maria hit weeks later, 60,000 people were still without electricity. And, there have been both political and humanitarian controversies swirling about possible miscalculations or reports underestimating the numbers of deaths caused by the storms there and the lack of physical and personnel resources to enable quality disaster relief.
In my own professional experience, I have focused on real-time evidence-based acquisition of personal health information, enabling individuals to review their own medical histories and communicate securely with medical professionals of their choosing. This enables improved self-care and facilitates needed medical interventions by facilities and doctors.
Let’s start with the most basic of these technologies: electronic health records. These records are vital to identifying, diagnosing and responding to an individual’s or population’s illnesses. Yet, because of the plethora of providers and healthcare facilities, the development of these records has been impeded by both the lack of data input available to the individual Anywhere, Anytime, and even with data input, by the lack of interoperability obstacles that proprietary vendors have erected to health data sharing. Although there are systems that would improve interoperability (Personal Health Information Exchange (PHIE)) through mobile platforms and servers in the cloud, we haven’t activated these options. We are more prone to lamenting than doing.
With its cloud-based ready technology, there is a true mobile solution capable of accessing the disparate EMR systems; the PHIE can be disseminated wirelessly with the result of consolidating personal health records information to provide a concise display of organized individual patient healthcare information on a smartphone, tablet, or notebook – Anywhere, Anytime in Real Time, using Electronic Health Records (EHRs) and open APIs (Application Programming Interfaces). This capability allows for secure storage and access of personal health information on individual mobile devices, delivering the value of an up-to-date personal health record anytime, anywhere, on and off line empowering individuals to initiate access to his/her own information from different source locations through an EHR-neutral platform, via mobile devices, in any location.
Imagine the value of this technology in the time of a natural disaster.
Moreover, the PHIE provides a life-saving In-Case-of Emergency (ICE) Solution that allows first responders, rescue and ER personnel to quickly access a person’s crucial life-saving information such as name, date of birth, blood type, emergency contact, allergies and current medications in emergency situations where one is unconscious or unable to speak. Quick access to records can be lifesaving if an emergency occurs and answers to those questions are critical during the first responder decision-making process. In some incidences of disasters, the PHIE can allow paramedics, emergency physicians, and remote facilities real-time access and communications about on a patient medical alert data at the point of trauma.
Another population centered innovation that is ready to deploy but not yet in widespread use is called “LifeWire,” a patented communication platform designed for population management to empower healthcare providers to have on-going patient contact and insight through personalized, automated remote dialogue. In a disaster, where infrastructure and homes have vanished, LifeWire provides a patented, intelligent, interactive communications engine designed for healthcare providers to engage patients remotely and in real-time -- just as if the person were sitting across from them. The system available is small, wearable or operating through a smartphone open application, and can be used to evaluate validated health conditions, situational awareness and a personalized treatment response.
Another problem in the context of disasters is chronic illness. For example, Puerto Rico is coping with the high prevalence of chronic diseases during times when critical conditions require access to medications, continuity of health care, electricity and refrigeration. Take diabetes for instance; not having insulin or the inability to monitor and adjust one’s blood sugar levels as needed can result in loss of consciousness or cardiac failure. Some organizations did respond to these situations with resources, but more can be done by governments and businesses, especially for employees suffering from diabetes. And what could they do realistically? They could arrange for remote, wireless diabetes monitoring and insulin delivery into the hands of patients across large scale populations.
We have readily available mobile diabetes monitoring and treatment systems that will reside wirelessly in cloud based systems, work personally on and within the patient or disaster victim, and mean the difference between survival or dying for the diabetic caught as victim in a natural disaster.
Such wearable and wireless systems provide integration of insulin sensor working remotely for surveillance and the delivery of insulin through a remote pump according to one’s own needs. Then data repositories can save, store and analyze the patient’s condition from distant locations with clinicians. But, sadly, we are not using the resources available to us.
It is easy to get discouraged. But, there are groups that are working to improve disaster relief. Consider the innovative response of the NHIT; with assistance from PwC and other partners, NHIT is providing medical response tools and technology to the Puerto Rico’s 20 Federally Qualified Health Centera and 85 affiliated health centers. Their campaign is “meant to be an enabler and to support” individuals.
The NHIT Care Campaign is composed of two phases. The first encompasses bringing a version of the open source electronic health record cloud platform OpenEMR Plus to Puerto Rico, a resource used in Houston after Hurricane Harvey. In addition, companies in addition to PwC, have provided needed assistance. Amazon Web Services donated the hosting services to enable the deployment of OpenEMR Plus. Additionally, Sprint has partnered with Bearcom and ALANAID.org to provide and deliver 80 two-way radios to the campaign to help the FQHCs and health centers better communicate. The Rotary International Houston 5890 Chapter donated 250 mobile communication systems to Puerto Rico’s Ponce Medical School Foundation.
Even with the existing efforts, it must be noted that the Puerto Rico relief efforts have remained underfunded and suboptimal. There has been overly bureaucratic governmental decision-making, strained financial, geographical, and disaster related logistics, and transportation challenges.
There are lessons here. There is an urgent need for implementation of modernized infrastructure around the globe. With so many lives at stake now and into the future, delays, fragmentation, and excuses offered by politicians, different leaders, and some governmental organizations and businesses must be remediated. Now.
Note: The views expressed herein are my own and do not represent the views of others.
Marc serves within U.S. government, advising senior officials on advanced and emerging health technologies. He is a recognized health systems and health information technology expert with more than thirty years of experience in the federal and private sectors, is highly focused on Health IT strategy and solutions, health care policy, planning and program management. He is known for building extensive relationships among the federal Health IT Community including wide recognition as an innovative problem solver. Today, Marc is collaborating on medical cybersecurity, precision medicine, and advanced and emerging health IT solutions for empowering the nation’s Veterans including IT digital infrastructure and Learning Health Systems. Marc served within PwC, PricewaterhouseCoopers, in the position of Director Washington Federal Practice, Health IT. He focused on developing business strategies and solutions for health informatics and business process change. Marc served within Northrop Grumman Health Systems Management as Senior Adviser, Federal Health IT; there Marc provided leadership in the collaboration and delivery of the nation’s initial mobile Health Applications, Blue Button for MyHealtheVet, for the first time for Veterans to receive their personal health records on smart phones. While in government, Marc worked on federal health IT sharing; served within U.S. Department of Defense, Telemedicine and Advanced Technology Research Center (TATRC) as well as the U.S. Department of Health and Human Services, Health Resources and Services Administration. He also led hospital systems planning for Greater Boston. Marc served as adjunct professor in Health Informatics within The George Washington University and is the author of many articles and co-authored the book, “Medical Informatics 20/20: Quality and Electronic Health Records through Collaboration, Open Solutions and Innovation.” Marc completed his healthcare background at Harvard University, Brandeis University and the George Washington University.