Patient Generated Data

In clinical practice patient generated data exists in forms of hospital records, insurance info and visit records. However the data from other capture methods are not currently being used in this area. How might the doctor facilitate the capture of usable patient data? Or is it the patients responsibility to collect and display their own data to their care provider.

Online Community Resources

Some patients use online communities, such as Twitter groups, to seek answers to questions their doctors aren’t addressing. The online presence offers support to its members because each member made up by someone with a direct connection to the topic issue.

Moderators of the communities validate the treatment recommendations. In 2006, researchers at the University of Texas analyzed the content from a breast cancer forum for medical accuracy. They found that 10 of the 4,600 postings contained false information. 7 of these posts were deleted leaving only 3 of the 4,600 posts to slip by uncorrected. (Suzanna Fox)

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 patients 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 patients 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 patients file.

Intervention Review



“Personal Health Narrative”
“Open Source Software”
“Symptom Checker”

The Issue with Health Apps

“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.

How do lay people determine what commercial interests lie behind the apps’ development & how might their data be used?

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 arm.

Through my research I have become aware of a few things that have shaped my view of design research.
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 through different ways but it wasn’t until I visited a physician myself that I formed and 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 lead to more questions. The cycle continues. It is with endless curiosity and gesture that I hope to find my solution.