独家优惠奖金 100% 高达 1 BTC + 180 免费旋转

Taking Care of Data

Recently much of the public conversation in the news and media explores how ownership of personal data is defined; especially in the capital market. This is seen through national policy (General Data Protection Regulation, EU), multiple lawsuits (FB & HUD), and publicly broadcast Supreme Court hearings (Facebook 2018). It is becoming more apparent that data privacy must be considered in policy and I believe this started with the individual.

In Taking Care of Data I am to focus on the patient’s relationship with their individual health-data. Do the policies and solutions to the free market apply personalized, data? How can the patient be empowered in their own health literacy without being exploited for the interests of the stakeholders at large? How might the layperson record and use their personal data to better understand health risks and diagnosis? And how might the primary care physician advocate for the careful use of data?

A quick notice: I am in no way a medical expert, instead I aim to use the contextualization methods of a designer to offer my own interpretation of the privacy debate and suggest how this problem may be solved through a user-centered design perspective.

Knowledge Transfer Ecosystem

In order to understand the complexity in the Electronic Medical Record field, an ecosystem of entities within the field of “health knowledge transfer” was crafted including how each entity flows and relates to another. This map is made up of entities surrounding both the Patient and the Primary Care Physician and includes macro levels of data sharing and storage. The Diagram illustrates a distinct separation of Patient-Generated Data and Hospital Records. The current system decentralizes the patient's data which causes the patient to reach out to external sources of care separate from hospital records.

One intervention to the sharing of data is the area of Medical Scribes. A Scribe sits in physically or digitally to a patient visit and is solely responsible for the electronic notation of the patient's chart. This frees up the physician to interact solely with the patient without bouncing between the patient and the electronic chart.

This works by using “Trigger Phrases.” When the doctor says something like “Your exam is normal except for…” this signals to the scribe that a note should be taken.

Now with advancing technology, with the patient's permission, visits can be recorded with a multi-directional microphone. Then encrypted and transmitted through the Internet to a scribe overseas. The scribe makes notes to the health system and updates the patient's file.

Data Access

The diagram above separates types of data that is only accessed using smartphone PGD and data types only accessible through the hospital system. It is important to note that much of the data on the right may be recorded in a smartphone, but the inherent procedural data is established in the facility of care. (Surgical, Immunization)

A Study in JAMA Network Open explores the difficulty of getting access to one’s Medical records. Dr. Harlan Krumholz, director of the Center for Outcomes Research and Evaluation at Yale-New Haven Hospital in Connecticut, had trouble getting records for a family member so they decided to study the setbacks to record retrieval.

Krumholz examined 86 of the highest World Report ranked hospitals and explained to them that her grandmother was recently treated. She asked the hospitals a series of questions:

Of the 86 hospitals, 29 listed exact costs on a request form on their web page, 1 offered records free of charge, 18 said there would be a charge of some kind, and 36 didn’t specify.

Costs on forms ranged between $0.00 — $281.54
On the phone, 82 disclosed the cost. One hospital’s charged $541.50. This is quite a lot of money for records of a person’s property under HIPPA

Krumholz argues:

“But we don’t need to lobby legislators in Washington for this,” he said. “The law is clear. We need to get health systems in compliance with the law.”

This section will examine the current interventions of digital space and health data privacy.

Digital Presence

87 % of 14–22 year olds have gone online for medical advice. The top three categories of interest being:

Fitness and exercise
Diet and Nutrition
Stress and Anxiety

The internet is becoming a place to seek diagnosis. These top three categories of information become apparent in Mobile Apps. Each using their own system to capture and use personal data.

“Symptom Checker” “Diagnosis” “Created by top Doctors” This is the messaging popular in the top-grossing Health data apps. The issue here is that the usage of these apps can come with hidden terms of use that can compromise the user’s privacy.

DIY Diabetes utilizes open source programming and Private information to hack insulin readers to serve the purpose of the user. The users were upset with having to read insulin levels that administer the drug.

The solution was discovered not by doctors or designers, but by the users of the medication once they became more familiar with diabetic data and open-source programming.

Looking forward, it would be advantageous to see how data may be left in the hands of the individual, and how open-source technology may close gaps of health issues by eliminating restricted access. This section will illustrate some projections and models for design activity.

Digital Product comes with the advantage of remote access. An individual can use storage systems to archive important data and access instantly.

The diagram above shows one model of how the capture of data translates into a narrative with accessible literacy for the lay patient. By framing the insights as a Personal Health Narrative the individual is able to comprehend a personal story free of Medical Jargon.

Patient Releases Data

How might we position data in the hands of the individual? This “future ecosystem” puts the data in the hands of the individual by creating an archive that the patient pulls information from and shares it conditionally to whom they decide. The patient can share with their online community or hospital records as they please.

The patient’s personal data is at the core of this project and how the usage+access of more detailed data can aid diagnosis through primary care.

Personal Reflection

Why don’t I have access to my medical records? This is the question that brought me to the area of health data ownership and privacy. I recently established new care with a hospital and was surprised by how there was no accessible record of my past immunizations. In order to get access to them, I was told it would take 24 hours and I must sign a release of information agreement. This was all quite the process for something I felt was a quite simple ask.

During the visit, I brought up my concerns with my physician and explained the opportunity for a design project. Soon I had 3 doctors in the room asking me how we could do it (make epic more legible.) While my blood was being drawn from the arm.

1. Field of view.
Global Health is a Monster Problem. It is important to frame a section of it and focus on it while allowing in outside perspective. I found this through the Data privacy question in this project. Privacy is different for everyone and is expressed in different ways but it wasn’t until I visited a physician myself that I formed an opinion on how my data should be handled. Sometimes it just takes a phone call or a meeting with someone close to you to become more involved in the issue.

2. The Treasure Hunt (Mine field)
Because the topic of discover was so big, I learned that an unwavering focus is a strong tool for tackling big issues. For every article you read, 10+ more questions can be asked to further your explorations. Those 10 questions lead you to 10 more readings, which leads to more questions. The cycle continues. It is with endless curiosity and gesture that I hope to find my solution.

Bibliography

Add a comment

What is your view?

Send

Related posts:

The Fixer

I heard this book mentioned in a movie. It was said that everyone should read it and it’s a very good book. I’m always on prowl for good books and I keep adding them in my to read list. I’ve checked…

Dark Chocolate Smeared Bedsheets

Sun in a night shaded sky. Moon at noon. Trust washing like lava with no cool cycle throughout byways and boulevards littered with quashed gnats Hayya alal falah Come to well-being, refreshment even…

CHOOSING RIGHT PROCESSOR IN DIGITAL SIGNAL PROCESSING

Digital Signal Processing (DSP) processors are microprocessors designed to perform digital signal processing — the mathematical manipulation of digitally represented signals. Digital signal…