Taking Care of Data
This project aims to apply questions of data ownership to healthcare, focusing on the patient’s relationship with their individual 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 someone 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?
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.
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.
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)
Data Overload
The amount of information a doctor must digest and interpret within a visit is extraordinary. The doctor must do this within a 30 minute visit that includes the doctor reading and explaining the collected data out-loud to the patient.
“One hour with a patient equates to two hours of entering data.”
— Twachtman, Gregory. “Study: One Hour with Patients Means Two Hours on EHR.” CHEST Physician, 3 Apr. 2019,
Data Dynamics in Healthcare
Strategy
By reversing ownership from the EMR companies to the individual, the Patient becomes a more powerful stakeholder in the usage of their data.