The coronavirus pandemic has revealed a significant gap in disaster management at many facilities, including those who treat in place and those who set up alternate treatment sites. To triage, treat, and manage the overwhelming volume of urgent and emergent patients, many provider organizations are passing on the opportunity to do epidemiological disaster information gathering and management. In our traditional approach to disaster planning, we knew the root cause of most disasters – usually geologic (e.g. earthquakes), weather (e.g. hurricanes and tornadoes) or utility failures (e.g. electrical, phone, or internet outages).
In those common but unfortunate disaster recovery situations, it is common practice to abandon privacy, security, and confidentiality protections, not because they cannot be done properly but because caregivers and first responders might be hindered in care delivery by rules that were created for “normal” operations. Also, since the root cause of the problems were well-known, data that would have helped produce insights into the causes weren’t gathered because they weren’t necessary. Our current situation is very different in that regard.
We desperately need data to help us gather insights, to identify patterns that will help us understand the immunological profile and response to coronavirus – who’s least and most susceptible, who’s likely to be asymptomatic, who’s likely to suffer and to what degree, and how do we test for disease state. We need data that analytics experts can use to collaborate with clinicians and epidemiologists to formulate the right questions to determine how to develop tests and vaccines to relieve pain, suffering, and eradicate this menace. It would be useful to know what factors are common to those afflicted and those who are immune, and what factors aren’t shared. We could use statisticians and data scientists to search for patterns which are not easy to discern by observers working independently. Those shared data and the information and knowledge that could be refined from it would help us develop personalized approaches to protecting the individuals in our population. There’s never been a more critical need for precision medicine, and precision medicine is data dependent.
As part of our disaster preparedness activities, we need to include “data and information first aid kits” with documented procedures about how to establish the practical levels for security, privacy, and confidentiality, and data gathering templates to ensure that we’re capturing relevant epidemiological factors. No doubt the type of data that we need to collect will change the more we learn about the disease. We need functional, comprehensive interoperability which, shame on all of us, should have already been in place to ensure that patient records are updated in real time. We must be able to share those data with public health officials at every level so they can convert the data into insights which can be disseminated back to the field to ensure we have identified actionable best practices, that we can personalize care to improve outcomes and flatten the curve in a more elegant fashion than waiting for people to get sick and recover.
Appropriate to the season, when this pandemic has “passed over”, when the new models of delivery are implemented, we must revisit our disaster planning procedures and gather stakeholders from all areas along the care continuum with renewed enthusiasm to create and implement a more resilient, more sensitive, and more agile response methodology for the good of local communities and for the globe.
Starter Contents for a “Data and Information First Aid Kit”
- Technological connectivity to all needed applications
- Policies and procedures to help authenticate users who require access to applications, either or both
- Roles based
- Communication devices for purposes of interoperability (as defined in the next major bullet)
- Access to patient records wherever they reside
- Devices for staff and providers to promote communication, coordination, and collaboration both internally and with public health agencies at all levels
- Communication devices to keep families of patients informed
- Interoperability – Technical, syntactic, semantic, organizational, community (e.g. HIEs), national, international
- Policies and procedures which describe conditions under which the following measures can be lessened from a “business as usual” situation
- Confidentiality (data and personal, e.g. curtains that protect eavesdropping)
- All accessible by digital workstations (form factor dependent upon situation)
- A means to document breaches should they occur, and when/how to report them before, during, or after the business continuity phase
- Data templates to help identify factors contributing to the suspected etiology
- Easily gathered via mobile devices
- Automatically fed by and feeding EHRs, EMRs, and community records (e.g. public health agencies)
- Policies and procedures for making real-time updates to disease/disaster registries and the aforementioned data repositories based on lessons learned in real time
- Policies and procedures for making connections for the patients and families to
- Community service providers (e.g. AuntBertha.com)
- Financial institutions
- DME vendors
- Other critical and important players in the supply chain
- Policies and procedures for release of information to appropriate parties of interest
- Governance charters and documentation of policies and procedures for bodies to oversee the disaster recovery and business resumption activities
- Data curation policies and procedures and people either on site or remotely with expertise to ensure that data is being handled thoroughly and properly
Let’s protect privacy, security, and confidentiality as we interact even in disasters. Let’s learn as we treat. Let’s share in real time as we learn. Let’s accelerate the speed to recovery. Let’s use what we have – data, interoperability, analytics, and experts – in a non-partisan, collaborative way to formulate solutions together – for us, for humanity.