Expanding the Dialogue on "Real-World Data" in Healthcare: Opportunities for Qualitative Evaluation and Impact

• In Event: From Data to Impact: Developing Research and Tools to Inform and Improve the Application of Sociological Methods

Abstract

Real-world data (RWD) in healthcare is defined as “data relating to patient health status and/or the delivery of health care routinely collected from a variety of sources (US FDA, 2022).” Typically, this data is operationalized as numeric data generated through wearable devices, electronic health records, claims, the internet, and similar sources. Often overlooked are opportunities to collect non-numeric, qualitative forms of data through RWD sources. Irrespective of whether data is quantitative or qualitative, RWD is messy, incomplete, inconsistent, and subject to biases. It nonetheless holds advantages over traditional clinical trial data (Liu & Panagiotakos, 2022), as it is collected with reduced burden from a broader population, often at a fraction of the cost (Baigent, 2021).
As qualitative sociologists working in healthcare, we evaluate programs in pursuit of improving care delivery. Our applied research setting requires us to creatively modify standard data collection processes in pragmatic ways that allow for uninterrupted care delivery. This often means relying on available, real-world qualitative data (Qual-RWD) and reconceptualizing rigorous data collection. In this talk, we will:
1. Define Qual-RWD and its relation to standard conceptualizations of RWD.
2. Assess the advantages of Qual-RWD such as alleviating qualitative data collection burdens upon providers and patients, including underserved populations.
3. Provide compelling examples of Qual-RWD methodology and analysis.
a. Patient Navigator Notes: In a project delivering mammography to women experiencing homelessness, we relied on patient navigators’ notes as they worked to schedule diagnostic exams.
b. Modified Ethnography Provider Check-Ins: To collect data from busy physicians on project status, we observed meetings rather than posed direct questions.
4. Offer a strategic framework for collecting and analyzing Qual-RWD in healthcare.

Our target audience is sociologists interested in practical and applied projects, and those considering non-academic career paths.

Authors

• Valerie L. Chepp, Cleveland Clinic

• Karie Feldman, Cleveland Clinic

• Heather McKee Hurwitz, Cleveland Clinic