My experience as a public health practitioner has convinced me that a lack of trust has become a critical driver of modern epidemics. We are seeing this unfold right now in the Ebola epidemic raging in the Democratic Republic of the Congo ― an epidemic that has been declared the worst in the country’s history.
Trust is the most important part of the doctor-patient relationship. I know that if I lose my patients’ trust, it will be impossible for me to effectively treat them. In order to establish a trusting relationship, I must understand my patients as more than just their diseases—I must understand them within the complex fabric of their social, political, religious and cultural belief systems.
I do this while they are healthy, so when illness does strike they can trust me to make the right decision for them. International responders’ failure to locate the DRC’s current Ebola epidemic within the country’s larger social, political, religious and cultural belief systems is precisely why trust was so weak when they arrived weeks ago to deploy vaccines and begin tracking the infection.
And we’ve seen this happen before. During the West African Ebola epidemic of 2014, a lack of community trust helped allow the virus to evolve into a pandemic, killing more than 11,000 people over two years and spreading overseas. Many international public health experts were blindsided by local community members’ hesitancy and fear. West Africans went so far as to hide their funeral services from international Ebola treatment teams; funerals are now thought to be one of the most important modes of transmission between dead victims and family members later infected.
Many West Africans turned to the familiar — traditional healers — rather than seeking modern medical treatment. Ultimately, anthropologists were deployed to gain a deeper understanding of the cultural nuances that needed stronger appreciation before the right interventions could be designed for specific communities. From this research, we learned that trust is the vehicle by which epidemic responses are executed effectively.
Yet that same lesson is catching us off-guard once again. In the North Kivu, an already awful situation is worsening, fueled by mistrust and conspiracy fears. Civilians are questioning if Ebola is possibly a political tool being used by opposition parties to alter upcoming elections. As a result, they are avoiding not just vaccinations but also testing and treatment. This means efforts at keeping track of who is infected ― and vaccinating those who have come into contact with an infected individual ― are failing. And the mistrust is not only directed at international responders — many locals don’t trust the DRC government, either.
Worse yet is that we knew this was coming. Conspiracies like these also plagued the last Ebola epidemic. In Liberia, civilians questioned if Ebola was a Western ploy to infect Africans; others wondered if Ebola was artificially created to sell vaccines to the poor.
“If I was approached by a doctor with whom I didn’t already have a therapeutic relationship and was told to take a pill or a shot, I’d be understandably hesitant.”
When I put myself in the mind of the patient, I am not surprised by any of this. If I was approached by a doctor with whom I didn’t already have a therapeutic relationship and was told to take a pill or a shot, I’d be understandably hesitant. Trust must be established before — not after — a disease infects an individual or ravages a country.
If public health efforts emphasized the building of ground-level trust when communities are predominately healthy (the same way I establish rapport with my patients over many years), we’d see responders and community members working together when an epidemic strikes. This would prevent a few cases from becoming hundreds or thousands.
Epidemics require quick action, but we cannot cut corners when it comes to understanding a community’s knowledge, attitudes and practices before employing interventions. What does the community understand about Ebola? What types of experiences are driving their belief systems? How can we best work within those systems to identify misunderstandings at their roots?
From there, how can we work with community leaders to best teach people in a way that is culturally appropriate and locally understood? That same thoughtful approach must be taken when it comes to vaccines, diagnostics and treatment.
Take vaccines, for example. U.S. physicians are very familiar with vaccine hesitancy. Almost every day, at least a handful of my patients refuse to get the flu vaccine. They often recount personal experiences in which they received the vaccine and still got sick that year. Some mistakenly believe the vaccine actually caused their flu.
This means I must take the time to explain that not every upper respiratory infection is the flu, and that the flu vaccine may very well have lessened symptoms that would have otherwise been much worse. Even then, my patients don’t always agree, but we continue to have a rapport that allows me to treat them for other conditions.
The same is likely to happen with Ebola. Some patients may be amenable to vaccination, some to treatment, some to testing and some to none of these. Nonetheless, public health responders must use every opportunity to build rapport, establish trust and prove to communities that they are there in the best interests of the community’s health.
Building trust with my patients has allowed me to convince people to undergo treatments that ultimately saved their lives. This trust was earned, not given. It required me to understand my patients at a very human level, and it required me to lose many battles to ultimately win the larger war.
The same must happen with our response to epidemics. We may not convince every single person to do everything we ask, but if we can convince a community to trust that we are there because we are concerned about them as people — not just as transmitters of disease — we will begin to see a very different response.
Abraar Karan, M.D., MPH, is a global health physician at Brigham and Women’s Hospital and Harvard Medical School. Follow him on Twitter @AbraarKaran.