Preserving a patient’s dignity is essential to creating a human-driven healthcare model, according to panelists from the HIMSS 2020 digital session “Dignity-Preserving Technology: Addressing Global Health Disparities in Vulnerable Populations.”

A person’s dignity is becoming increasingly intertwined with technology, according to panelist Dr. Alex Cahana, chief medical officer at ConsenSys Health. He says that technology has become an important mode for sharing how people think, feel and speak.

“And so if we are in essence our data, then any third party that takes that data – with a partial or even complete agreement of consent from my end, and uses it, abuses it, or loses it – takes actually a piece of me as a human,” Cahana said during the panel.

With that, the need for data privacy and consent is essential, he said. 

From the beginning, health data was intended to empower patients by giving them access to their health information. However, there are many instances of patient data being used in ways that weren’t authorized or consented for, according to Dr. Ali Loveys, the managing director of federal practice digital health and U.S. healthcare blockchain at Ernst and Young.

Especially during the COVID-19 pandemic, the need for safe data sharing has played a role. For public health officials to keep track of the virus, they have to know where it is and who has it. To get that information, it requires patients to consent to their health information being shared.

“There are some people who say ‘Yes, I’m willing to do that’ and there are some people who say ‘Absolutely not’,” Loveys said.

Dignity-preserving technology allows third-parties to get consent from the patient in a flexible way. It can be a fluid process where the patient decides what information is shared and for how long, according to Loveys.

“Until we start putting consent into the hands of the patient, the citizen, the vulnerable person and say ‘how do you want this data used?’ then we run the risk of destroying trust, we run the risk of misusing or abusing the data,” she said.

The issue with consent, according to Dr. Pierre Vigilance, the founding principal of HealthUp, is that it requires literacy, which is not universal.

“This is why the need to go upstream and have an understanding of the more global reasons for why some vulnerable populations lack the skill or ability to be literate in a number of different areas of their life so they can understand what they’re providing when they say ‘yes’ to their data being used in a particular way,” he said.

One way to achieve literacy is through broad education that encompasses areas like social and physical learning, Vigilance said.

Improving literacy alone, however, is not enough when the system itself was built to create vulnerable populations, according to Cahana.

“The foundational things that pertain to dignity, to inclusivity, to the build of health and social capital [are things that] vulnerable populations are not getting and it’s by design,” he said.

Instead, he says that global policy changes need to be enacted that rebalance the system.

A pay-for-success model for individuals is one option to improve the current system, according to Vigilance. In it, patients can be incentivized when they have good health outcomes and would in turn be more likely to participate in the health system.

“So if I’m saying you can have access to [my data], maybe I’m charging for it and if I do things that move my health needle in a certain direction, maybe I can be further incentivized,” he said.

Twitter: @HackettMallory
Email the writer: mhackett@himss.org