That digital media, called MyHealthMyRecord (MHMR), is comprised of a person-centered narrative capture system built around a core concept of a digital scrapbook whose contents are private but registered. This scrapbook serves as a repository for system data and reports as well as short patient commentaries on user pain care needs and experiences as they happen. We aim to show how this MHMR platform can support curation of a personal pain portfolio for informing both community Healthcare Professionals (HCPs) and clinical pain specialists about the user's pain self-management between visits to HCPs.
The MHMR system is designed to enable multimedia expressions of experiences living with a chronic condition. It consists of a tablet-based video application that accepts short duration audio/video user input (see Figure) and a server system for secure transfer, processing and storage of video records. The user can organize video records along a linear timeline or by other organizing structures such as theme, and then curate who can access various videos or organizing structures. For example, medical personnel could access a set of clips related to pain experiences while a school accessibility specialist could access clips related to difficulties accessing school resources. As such, it can function as a digital video scrapbook which documents and bundles patient experiences.
The system was designed to be inclusive of users with different needs (e.g., sign language users) by allowing them to record audio and/or video on the topic of their choice at their leisure. The main goal of MHMR is to provide users with a safe way to record not only their physical state, but also their emotional state, without sacrificing their independence or privacy. Privacy is protected through data indexing and encryption strategies that are not a focus of this paper. However, the need for privacy influenced our results.
Implications for the MHMR System
Initially, the system was designed to be used for medical purposes, as a medical journal. As our research progressed, the use of the system shifted from a video journal to a video scrapbook. The MHMR interface seemed to support PX’s needs for recording a variety of topics including recent barriers encountered, expressing frustration, deliberating issues, describing pain, and conveying excitement when s/he encountered accessibility in action.
Although a video duration cut-off was not imposed, it would seem that short duration videos were preferred. Limiting videos to less than one minute would be a viable interface option for the system.
Another interface issue is allowing the retaking or deleting of a video. PX suggests that a single take provides more authentic commentary. However, it may be difficult for others to communicate everything the first time through. There may be a trade-off between the perception of authenticity and the clarity that comes with practice. Further research about limiting or saving the number of takes, and the impact on authenticity and effort is required.
The video and networked nature of the system caused unanticipated issues for PX’s immediate family. For example, Patient X’s parents were very concerned about the security and safety of the videos. This then stimulated algorithmic and policy attempts to mediate these concerns. A safe and secure server was built to securely store PX’s data and appropriate password protection set in place. Allowing the user to explicitly separate personal videos from others was added (see Figure ).
System Description Figure