The 2014 World Development Report from the World Bank sketches how confronting risks, preparing for them, and adopting appropriate coping strategies can make a vast difference in outcomes, sometimes at an epic scale. In 2010, both Haiti and Chile were victims of large natural disasters of similar destructive capacity. Both countries experienced serious earthquakes, the larger of which struck Chile. However, while Chile suffered a loss of 300 lives as a result, Haiti lost in the order of 250,000 lives.
The World Bank attributes this to several causes, one of which is the degree to which Chile learned from a previous experience and invested in insurance, undertook preparation to reduce risk, and improved their capacity to cope with the aftereffects of future disasters. Chile confronted the lessons of the previous disaster, there was a national awareness, and as a result, building codes were changed, and the country took insurance both against damage and in terms of divestiture of investments and commerce. These changes allowed Chile to suffer less damage to people and infrastructure, recover faster from the shock economically, and to learn from what worked and what did not. Without these investments, it is believed that Chile’s death toll in the 2010 earthquake would have been of an even greater magnitude than that of Haiti.
The WDR2014 report is an evolution from early risk management approaches, and instead of the highly technical perspective taken in earlier years, the report views risk management as a long-term and strategic process. The WDR2014 report sketches two principles in risk management: To be realistic, and to build foundations. In the former, they are recommending that risk reduction attempts be pragmatic and simple rather than theoretical and extensive, and in the latter case, they are advising that risk reduction efforts build on each other and take a long-term view. To comply with this advice and to manage risk effectively requires that the efforts take into account several obstacles, such as the information requirements of the population involved, human behavior and change, resources available, and the uncertainty of risk.
Risk Management in the WDR2014 report thus rests on four “pillars”
The focus of this article takes a cue from the two principles, and offers a narrow perspective on a single issue, that of the health records of people forced to migrate because of shocks such as natural disasters. This focus addresses the knowledge needs when receiving healthcare organizations must care for refugees and people affected by shocks such as natural disasters, but could hold true for any form of shock in which healthcare delivery was disrupted. The paper addresses a form of insurance in the shape of planning for eventualities, protection from medical delays and mistakes, and a coping strategy for dealing with migrant patients or disrupted healthcare delivery.
Case: Typhoon Haiyan 2013
In November of 2013, typhoon Haiyan reached the Philippines with the strongest winds ever recorded. As a result, the infrastructure was severely damaged, a large proportion of the population was displaced, and over six-thousand people died. The Philippines comprise over 7,000 islands, and few hospitals or health care providers (HCP) have Electronic Health Records (EHR). One highly specific problem was that people’s health records became unavailable both for those who fled and to those who stayed but were unable to reach their HCP.
For this article, a local doctor providing endocrine care was interviewed on Twitter using the hashtag #wdrrisk.
Throughout the typhoon, many Tacloban residents went to Manila either to escape danger or join family or friends who had left, and of these were people who were already ill with current or long-term chronic illnesses such as cancer, or became ill while away from their homes in Tacloban. Few people had made provision to take their medical records with them, and valuable medical information such as test results was lost or otherwise not available to HCPs in Manila.
The doctor interviewed for this paper is an endocrine specialist based in Manila, and saw many patients who were refugees from Tacloban. Patients typically had no documentation of their medical history, and no ability to access the facilities in Tacloban where their records were kept. Because few medical facilities in the region use electronic records available through the cloud, even those patients whose providers were on an EHR lacked the ability to access their records. Patients typically have only a vague recollection of what tests or procedures they have previously undergone, when these were carried out, and what the results were. As a result, patients without medical records experienced increased risks, delayed care, and additional burden of repeated tests. Where patients were on medication, a lack of a definitive history regarding dosages, patient reactions, and allergies required that HCPs started drug regimens from base dosages and take a conservative and cautious approach in order to avoid potential overdose or adverse reactions. As a result, many patients may have experienced sub-optimal results until the drug selection and dosages were calibrated to their individual needs and responses.
The doctor reported that repeating tests delayed treatment, increased patient risk, and raised the cost of care, but some tests cannot be repeated at all because the results are based on historical progression of a condition. The doctor was unable to fill in the blanks in some cases, and was left with an incomplete clinical picture that increased patient risk. For example, for some chronic patients the doctor needed histology test results that are helpful in cancer staging and which could not be reconstructed. Without these historical data, the doctor had uncertainty and had to make best estimates that may have increased patient risk or resulted in sub-optimal care. The lack of a longitudinal view of these patient’s history and healthcare journey, lost or missing data, and gaps in patient history increased the risk of inappropriate or ineffective care.
Personal Health Records
In order to provide effective healthcare, clinicians and other providers need information related to the patient’s present condition, past medical history, and core health records such as medication use, existing conditions and treatment, and medical images, prescriptions, and procedures. These are usually kept by the person’s primary care facility, and may be kept either as physical records such as patient files, x-ray plates, and the like, or as electronic records and images. However, when the patient migrates or their provider’s infrastructure is disrupted, these records may be unavailable. Personal Health Records (PHR) are an alternative that gives individuals the ability to either carry their health records on removable storage such as thumb drives, DVD, etc. or to link to them on the web using a secure repository, e.g. Microsoft HealthVault.
PHR puts the patient’s medical history in their own hands in a way that is likely to be transportable during a disaster, and unlike paper records, can be encrypted and secured in order to maintain patient privacy. The downside is that PHR relies on a certain level of technology and computer literacy on the part of the patient to realize the full benefits. However, simply providing the patient with their records in the form of an encrypted memory stick requires minimal computer literacy on the part of the patient, and is more likely to accompany the patient and be available during disasters than paper records.
The advantages of having PHR are:
- Faster triaging leading to fewer delays in care
- Definitive drug and test data, enabling better targeting of treatment
- Longitudinal views of illness progression, allowing more appropriate treatment and drug dosing
- Documented endorsement back to their home town HCP, allowing better continuity of care
Tacloban had been hit previously by natural disasters, and although many aspects of the four pillars of Knowledge, Insurance, Protection, and Coping had been addressed with regard to physical infrastructure and administrative processes, the need for maintaining the fidelity of medical histories was not adequately addressed. Lack of learning from those events with regard to medical records resulted in preventable morbidity and mortality across the region, but there is hope for improvements due to new frameworks. The PHR framework for the Philippines described by Dr. Alvin Marcelo outlines a way in which lessons from Haiyan and other natural disasters in the Philippines could be put to use in creating a way to utilize PHR to avoid losing valuable medical data, and reduced cost, patient risk, and delays in provision of care during disasters.
This paper was developed as a result of interactions with the participants of the #HealthXPh tweetchat where the issue was first discussed. Further thanks go to #HCLDR, #BioEthx, and #HCSM tweet groups. A special thank you is due to Dr. Iris Thiele Isip Tan for her willingness to be interviewed online for this paper and for providing insight into the effects of not having access to patient history during disasters. Doc Iris also provided the links to the PHR framework created by Dr. Marcelo.