JMIR Publications

ABSTRACT

Background:

Big data research in the health field is hindered by a lack of agreement in how to identify and define different disease conditions and their medications. This means researchers and health professionals often have different definitions of the same condition. This lack of agreement makes it difficult to compare different study findings and so hinders the field’s ability to do repeatable and reusable research. Aim: The aim of this study was to examine the views and needs of: 1) users including researchers, health professionals, and clinicians, and 2) designers such as the health informatics teams, in creating a portal of definitions for disease phenotyping (a concept library).

Objective:

The aim of this study was to examine the views and needs of: 1) users including researchers, health professionals, and clinicians, and 2) designers such as the health informatics teams, in creating a portal of definitions for disease phenotyping (a concept library).

Methods:

Qualitative study using interviews and a focus group. One to one interview with researchers, clinicians and managers have been conducted (n=6) to examine their specific needs. In addition, a focus group with participants (n=14) working with the SAIL databank, a national e-health data linkage infrastructure, was held to perform a SWOT analysis (Strengths, Weaknesses, Opportunities, Threats) for the current system and the proposed concept library. The interviews and the focus group were analysed separately following Braun and Clarkes (2006) analysis approach.

Results:

Most of the participants think that the prototype concept library will be a very helpful resource for conducting repeatable research, but they specified many requirements needed before its development. Although, all the participants stated that they are aware of some existing concept libraries, the majority of them expressed negative perceptions about them. The participants mentioned several facilitators that would stimulate them to share their work and/or to reuse work of others, and they pointed out several barriers that could inhibit them to share their work and/or to reuse work of others. The participants have suggested some developments they would like to see to improve reproducible research output using routine data.

Conclusions:

The study indicated that most interviewees would value a concept library for disease phenotyping. However, only half of the participants felt they would contribute to providing definitions for the concept library, and they reported many barriers regarding sharing their work on a publicly accessible platform. Analysis of interviews and the focus group revealed that different stakeholders have different requirements, facilitators, barriers, and concerns of a prototype concept library.