Using online resources in health co-inquiry: A bifurcated method for analyzing stakeholder narratives
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Health Co-Inquiry is a process whereby stakeholders in management of chronic health (or mental health) conditions collaborate, with efforts toward stakeholder activation, person-centeredness, evidence-based practice, and integrated care. With rapid growth of Internet use by the general population in the new millennium, persons with chronic conditions and their caregivers, friends, family, and health providers may be using the Internet more in order to seek information, share advice, and give or find support and services. Thus, the Internet can provide an important avenue for Health Co-Inquiry and for researchers who want to know about stakeholder experiences. A fundamental aim of the current authors’ “Health Co-Inquiry Project” is to better understand stakeholder experiences in chronic conditions through their online narratives. Here we report, specifically, about our development of a Bifurcated Method for analyzing narratives online. It involves: (1) thematic analysis of narratives from publicly available blogs, forums, and other websites related to chronic health conditions, and (2) creation of a computer program that “crawls” the URLs to locate and count the frequencies of general health and condition-specific terms and provide pictorial representations of the relative frequencies of words on a web page. The Bifurcated Method is novel in social research, using online forums as data, evaluating them thematically, and crawling them with a computer program that quantitizes specified search terms. One benefit is comparison of results from the two sub-parts to look for apparently convergent and divergent information across the two prongs of analysis. Safeguards include removing stakeholder monikers from quoted narratives, and striving to use only publicly available URLs. The present report provides details about the Bifurcated Method and considers limitations of the approach for those who might use it. Specific results for each health condition from the larger Health Co-Inquiry Project are provided elsewhere.
KeywordsHealth co-inquiry Chronic health conditions Patient activation Person-centered care Evidence-based practice Research methods
This study is supported in part through an institutional grant from The National Science Foundation to Malone University. CC-NIE Award Number #1541342. The current authors received a grant sub-award from it. Special thanks go to M. Adam Klemman, Jim Shaffer, Jason Courter, and Shawn Campbell (recipients of the institutional grant), who utilized it to help enhance our data collection. Additional thanks go to Camden Baucke, J. “Harley” Ferrel, Tess Schmucker, Matthew Beechy, Rosa Cleaver, Tyler Bowman, Kathryn Bash, and Evan Zorn, for their assistance searching for URLs and composing dictionaries for specific health conditions. Special thanks go to Rosella Groves for graphics and to the editors and anonymous reviewers for their helpful comments.
Compliance with Ethical Standards
Conflict of Interest
On behalf of all authors, the corresponding author indicates that there is no conflict of interest.
The current research was supported by a grant sub-award via an institutional grant from the National Science Foundation, CC-NIE Award Number #1541342. Additional information about the grant can be found in the acknowledgements that accompany this article. The study was reviewed and approved through an expedited review procedure via our institution’s IRB. The study protocol is compliant with the 1964 Declaration of Helsinki and later addenda, the Belmont Report, and Title 45 Part 46 of the US Code of Federal Regulations.
The current study uses online posts that are publicly available. The data are artifacts, and no contact with live participants occurred during data collection. As such, informed consent was not sought. However, as a research safeguard, all online users whose posts were used as data were assigned random participant numbers. Thus, no online monikers are provided in our published reports, and this helps to create a buffer between readers of our published reports and the online posters.
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