With each new positive COVID-19 case, questions follow. How sick is the person? Do they have any underlying health conditions? How did they get it?
Legally, all of that is private. But as cases increase in Kenya, public officials, journalists and health care providers must negotiate the tensions between privacy law and the public’s need for information critical to understanding the pandemic.
Kenya law protects personal health information, and that hasn’t changed during the coronavirus pandemic. The law outlines who can have access to protected health information, when it can be disclosed and for what purposes.
It’s this idea of protecting the privacy and security of certain patient health information, during their most vulnerable moments. For COVID-19, the Health Act 2017 requires that hospitals and public health departments must be careful to protect the identity of each individual with a positive diagnosis. Members of small communities may want to know who has tested positive and how they’re doing, but health officials legally can’t release that.
When a new COVID positive case is diagnosed in the community, the doctor first notifies the patient. Then they talk through care and quarantining away from others for 14 days. If symptoms become severe, the patient may be hospitalized, but they do not release any details to the public.
Certainly not the level of illness, maybe if they’re asymptomatic or symptomatic, that’s about the extent of it. Contact tracers get to work. They interview the patient, figure out possible exposures and talk about safe quarantining to reduce any further spread of the coronavirus. Privacy rules also apply, so when they communicate with close contacts, they can’t disclose who the positive case is, only that the contacts were potentially exposed.
But personal accounts of what it’s like to have COVID-19, shared on social media or by news outlets, have been crucial to public understanding of the pandemic. Personal stories capture complexity, feeling, and detail that data cannot. Patients in hospitals, can still choose to share their stories. In those settings, journalists must get authorization from patients each time before reporting personal information.
Of course, patients are free to speak publicly with anyone at any time. If individuals are okay with their information being shared, then that’s fine. And so we also see that in the media and other places, where people share their status or on Facebook or with their employer. Individuals are always welcome to share their information. We just can’t share their information without their permission.
But access for journalists can be challenging. Some people are saying that really people don’t understand the devastation that this is causing, because they don’t get to see it firsthand. Some of these privacy rules might hinder in disseminating of important information.
Considerations have prevailed in the pandemic media coverage, so journalists have interviewed health care workers and used creative visuals to report on what’s happening inside hospitals. When you think about it, it’s quite a delicate balance.
On the one hand, you have providers and the need to protect privacy of patients during their most vulnerable moments. And then on the other hand, the public doesn’t really get to see the extent and toll of this pandemic. And that’s difficult.