Qualitative data collected via ethnography, focus groups, in-depth interviews, direct observation, and other means can be helpful or even necessary for understanding how patients, clinicians, and other stakeholders decide among alternative options in health care. But patient-centered outcomes research (PCOR) is typically done via statistical analysis of quantitative data (e.g., surveys), and it can be challenging to incorporate qualitative data into PCOR. The main goal of this project is to develop new methods of analyzing, presenting, and sharing qualitative data that may help make these data more useful in PCOR and more accessible for PCOR stakeholders, including patients, clinicians, and researchers.
The key innovation we propose is to adapt a visual data analysis technique used in the bench sciences—the genetic microarray—for use with qualitative data. We call this the “ethnoarray.” Like the microarrays on which it is based, the ethnoarray consists of color-coded “cells” arrayed in a grid. We have developed a mock-up of an ethnoarray using data from a National Institutes of Health-funded study of decision making by patients with advanced cancer. In this mock-up, columns represent individual patients and rows represent such factors as social support, disease characteristics, provider-patient communication, and so on.
Our proposed study takes this new tool—currently in its infancy—and via the following steps will develop it into a sound and useful data-driven resource for patients and those who care for them. Our specific aims are: (1) to identify rigorous methodological standards that are relevant to the use and presentation of qualitative data in PCOR; (2) to develop robust methods for constructing the ethnoarray and other visualization approaches, by analyzing already-collected qualitative data of cancer patient decision making; (3) to conduct interviews with current cancer patients to gather new qualitative data for use in the ethnoarray and comparative approaches, and get patients’ feedback and suggestions about how to improve the ethnoarray method; and (4) to work with stakeholders to assess the utility and feasibility of this new methodological tool and develop a plan for dissemination.
By carrying out these aims and learning from PCOR stakeholder feedback, we will fully develop and refine the ethnoarray approach for use by patients and in PCOR.
Daniel Dohan, PhD, talks about his PCORI-funded research project that aims to integrate patient and provider narratives into a medical database.