At this point in the COVID-19 pandemic, the importance of informing people to help them make their own decisions is growing. Many regions are lifting social distancing recommendations, but epidemiologists warn of a surge in cases if restrictions are lifted too soon.
And when there are gaps in information, there are often competing forces seeking to fill them. Some may be based on scientific inquiry; others may be unsubstantiated opinions. They may all be trying to allay the fears of an anxious public.
The Ebola response was hindered by rumours and misinformation. Some people said Ebola was made up and didn’t exist or that it was a cover for illicit trading of organs. Many of these rumours had a negative effect on prevention and treatment efforts. Communities were reluctant to believe that Ebola was a real threat and avoided visiting clinics for care. Misinformation hindered the ability of healthcare providers to reach the populations in need and potentially contributed to the rapid rise in the number of cases. Patients who could have benefited from care continued to infect other members of the community, or passed away.
One well chronicled and researched example of the consequences of not following scientific evidence relates to HIV in South Africa. An estimated 330,000 lives were lost due to government’s failure to adopt evidence-based treatment guidelines. South Africa eventually retreated from this position and achieved dramatic improvements in HIV reduction.
COVID-19 differs significantly from HIV and Ebola, but the potential consequences of having a misinformed public are similar. And much can be learned from earlier epidemics to ensure that the same mistakes aren’t repeated.
Experiences from the field
One specific challenge with our healthcare system strengthening efforts in Kenya is that many patients preferred to receive care from herbalists and found it convenient to consult them. As a result, patients would take unproven herbal remedies to treat conditions such as HIV and diabetes and often suffer from serious side effects with uncertain clinical benefit.
Our programme has been able to incorporate evidence-based treatment options into their care by creating stronger bonds with the community. We did this by shifting care from distant facilities to meeting points that are much more accessible for patients. This approach has led to marked improvements in outcomes. Patients with hypertension have greatly reduced their blood pressure compared to what they typically experience from facility based care.
We also included patients from the communities we serve in the healthcare team. This helped us overcome many of the challenges with trust and lack of convenience that patients often mention when deciding to forgo care from the healthcare system. The inclusion of these peer providers who have successfully managed their conditions has helped serve as a bridge between the community and healthcare system to improve our relationship and ability to communicate with each other.
Our community-centred approaches have helped make evidence-based information more accessible for the population we serve and subsequently helped to improve health outcomes with limited additional costs. This integrated approach has enabled our programme to build trust with the communities we serve and directly address the challenges with misinformation as members of the community feel much greater comfort with seeking advice from providers who are based within the community.
Patients have also shown a much higher likelihood of adhering to the recommended treatments when services are delivered in this fashion. Seventy percent of patients were likely to continue seeing formally trained providers as opposed to only 31% when care is delivered from facilities.
How the public can help
As scientific inquiry reveals more about the novel coronavirus, the public must insist that leaders follow the evidence. In countries where officials are democratically elected, the ballot box is one way to remind them of the potential consequences of making decisions that harm the public.
Social media is another tool the public can use. But because it has often been cited as a source of misinformation, there’s a need for greater efforts to check facts and improve the accuracy of information shared on these platforms.
The limitations in connectivity in remote areas are a challenge. A combination of print, radio, text message, phone, and online messaging should be introduced from trusted sources to ensure citizens have access to the latest evidence-based information.
Increasing awareness in these ways would help to relieve the burden on health workers. They spend precious time correcting the public’s misconceptions and they sometimes face abusive behaviour from a panicking public.
As we all grapple with ways to assist in the response to coronavirus, one simple thing all of us can do is rely on verifiable facts to guide our actions.
Our examples from Kenya show that when healthcare providers integrate into communities, people will be more likely to seek out their advice and trust their opinions. The public has a responsibility to follow the guidance of trained healthcare experts. But healthcare providers must develop strategies to more effectively conduct outreach activities to educate the community. Instead of waiting in clinics for patients to come to them, providers must leave the confines of the clinic to meet community members where they are (while still adhering to social distancing recommendations).