JMIR Publications

ABSTRACT

Background:

With the growing emphasis on patient-centered care, patient narrative data in online health communities and forums are receiving increasing attention from the scientific community. Natural language processing (NLP) methods are gaining more and more attention due to the enormous data volume. However, state-of-art NLP can only address simple research questions that do not require high-resolution analysis of patients’ narratives. Manual qualitative analysis still plays a pivotal role in answering complicated research questions from patient narratives.

Objective:

To develop a systematic framework for qualitative analysis of patients generated narratives in online health communities and forums.

Methods:

Our systematic framework consists of four phases: 1) data collection; 2) data preparation; 3) content analysis; and 4) interpretation of the results. Data collection and data preparation phases are constructed based on text mining methods for identifying appropriate online health communities and forums for data collection, differentiating posts of patients from other stakeholders, protecting patients’ privacy, sampling, and choosing the unit of analysis. The third phase is built on the Framework Method for content analysis, which facilitates and accelerates the identification of patterns and themes by an interdisciplinary research team. In the end, the focus of “interpretation of the results phase” is to measure the data quality and interpret the findings regarding the dimensions and aspects of patients’ experiences and concerns in their original contexts.

Results:

We demonstrate the usability of the proposed systematic framework using two case studies: 1) a published case study on determining factors affecting patients’ attitudes towards antidepressants, and 2) an ongoing study about identifying the disease management strategies in diabetes patients with financial difficulties. The framework provides a clear step-by-step process for systematic content analysis of patient narratives and produces high quality structured results that can be used for describing patterns or regularities in patients’ experiences, generating and testing hypotheses, and identifying areas of improvement in the healthcare systems.

Conclusions:

The systematic framework is a rigorous and standardized method for qualitative analysis of patient narratives. Findings meaningful information through such a process indicate authentic dimensions and aspects of patient experiences, and shed light on patients’ concerns, needs, preferences, and values, which are the core of patient-centered care.