Carla Comic

John Snow was a young medical doctor in London England, who found himself in the middle of an epidemic in 1854. Other experts were convinced that the disease was an airborne “miasma”, but Snow believed the pathogen actually spread via contaminated water.

Snow was a dedicated contact tracer; he confirmed his theory by meticulously assembling evidence of infection, talking to people, reconstructing and tracking the daily movements of infected patients in and around the neighborhood. 

He was a pioneer in using the power of data. Snow analyzed the clusters of infection and determined that each person had an important thing in common: they all retrieved drinking water from a hand pump well, located on Broad Street. 

John Snow was convinced by the data about the source for the London outbreak, and his concern for public health led him to oppose the medical beliefs of his time. He convinced the council in London’s West End to disable the Broad Street pump, and this saved many lives.

Carla wakes up early with a high fever and tenacious cough.

After browsing online she makes a doctor appointment. 

The next day, Carla takes care of errands . . . 

. . . and then drives to the health clinic. The verdict? Likely the seasonal flu. Medication is prescribed.

The rest of Carla’s day generates even more data . . . banking, library, paying bills, picking up a prescription.

Carla falls asleep thinking about her data, and she dreams of how her digital rights should be greater than or equal to her rights in the analog world . . .

Several days after visiting her doctor, Carla isn’t feeling any better — in fact, somewhat worse. As she browses on websites about this strange new virus, and its symptoms, treatment, and testing, she begins to feel a bit overwhelmed, and frustrated. 

Various legal-sounding notices appear, asking her to accept privacy policies, data protection notifications, and lengthy terms of service. In each case, she reluctantly clicks through to get to the desired content.

Based on where Carla goes online, what she searches for, and what she clicks on, ads begin appearing, for unproven treatments, hand sanitizer and face masks — from companies she’s never heard of. 

Carla wishes that she had a resource to navigate all the data; a digital advocate that she could trust, to help confirm information, verify companies, manage her privacy and protect her best interests.

After weeks of bed rest, Carla finally recovers from her illness, and is ready to reenter the physical world of her small city. As she walks through town, she thinks about the various systems she interacts with, which provide data, or gather data about her. 

In office building lobbies, she encounters guards deploying temperature sensors and “whitelisting” apps to determine if she has an immunity certificate. Carla wonders, who is actually running these systems? And how is her data being managed? 

As Carla goes about her daily activities in her local cityscape, she imagines how a personal digital fiduciary could provide her with a way to interact in real-time with a community data trust, and other digital systems that she may encounter in her travels. 

A personal digital fiduciary could not only interact with systems on Carla’s behalf, but also protect Carla by examining and challenging other systems. For example, a Personal AI could be programmed to operate under fiduciary duties of loyalty and care, and do things like:

· Question attempts to analyze Carla’s personal data without her consent

· Block unwarranted forms of surveillance and data extraction

· Thwart attempts to manipulate Carla’s activities in her physical environment

Carla has survived Covid-19, and is thankful to be alive. At home, during the quarantine, Carla joins the masses of people taking the opportunity to sort through their things and discard what they don’t really need. As she unpacks dusty boxes and photo albums, she comes across pictures from her grandfather on an old camera disk, in a format she can’t seem to access. But Carla remains determined to pull together her most precious data: her digital artifacts.

Carla realizes that there is a great deal of data about her, scattered in many places. But how can she even begin to map it all out? Where is it located, how is it formatted, who has control over it, how can she access it? Where does she even start?

Carla’s journal daydream: I love music. To me, my online identity could be like the notes linked together on a music sheet, coming to life with an orchestra to create melodies and harmonies, rhythms and crescendos. That particular story of my data, that musical score, isn’t really being told right now. There’s data about me in databases but I don’t hear the music in it. I make some posts on social media, but I haven’t really put it all together to convey what is truly important to me . . . 

. . . I wish there was an app I could use or even a place or person I could go to for help with my data. I wish there was a digital fiduciary service in my town.

Surveillance

Data is gathered all the time, as we use devices, and as we move about in the world. 

Extraction

Companies extract data from our actions, our purchases, what we type in, everything we do. 

Analysis

Increasingly powerful systems are used to analyze our data, which can include pulling together a myriad of fragments picked up from around the Web, without our fully informed consent.

Typical Terms of Service don’t really tell the story. If we were clearly asked, would we consent to the creation of highly detailed profiles that often unearth very private details about our lives? No, we probably would not consent to that. Many companies participate in data pools, markets and exchanges where data can be obtained for any number of purposes. 

Currently there is no simple way for anyone to get a clear picture of who has what data, who has done what kind of analysis, for what purpose.

Manipulation 

The data that is gathered about us can give companies the ability not just to market, but to manipulate.

Unchecked power to gather and analyze data gives companies the ability to “channel” us towards behavior that may not be in our own best interests, but may be in the best interests of the company.