Engaging Patients in Patient Education Research: A Short Review of Qualitative Approaches

This week’s blog post is from Dr. Sean Halpin, who is a Senior Research Associate with Evidera, a component of Pharmaceutical Product Development, on the Patient-Centered Research team. Dr. Halpin has over a decade of experience leading socio-behavioral studies across a wide range of chronic and infectious disease areas and has published numerous journal articles to do with patient care. His responsibilities at Evidera include preparing research proposals, developing and executing research protocols, overseeing data collection and analysis, interpreting the research results and supporting sponsors strategic goals, managing operational and financial aspects of research studies, and disseminating results. Dr. Halpin has a Ph.D. in qualitative research and evaluation methodologies from the University of Georgia and an MA in developmental psychology from Teachers College, Columbia University.

Norman Rockwell’s painting Doc Melhorn and the Pearly Gates depicts a prototypical medical doctor carefully examining his young patient while a woman, presumably the child’s mother, comforts the boy. You may imagine the doctor authoritatively handing the mother a bottle of pills from his pocket, “take these twice a day and call me in a week”, and the mother unquestioningly following orders. The painting was pure nostalgia even in 1938. Since that time, as the years have peeled by, the sentiment of a doctor’s authority has slowly eroded, making way for a patient-centered approach to medical care (Mead & Bower, 2000). For over half a century, this new frontier of engaging patients in and educating them on their own medical care has slowly emerged alongside innovative ways for measuring this patient education (Gerteis, et al, 1993). In this short blogpost, I will review some of the research approaches to assessing patient education including theoretical frameworks, patient-reported outcomes research, collecting and analyzing data, and special populations.

Theoretical Frameworks

Theoretical frameworks provide a skeletal structure for organizing a qualitative study of patient education—and fortunately, there are plenty to choose from. They can be used to broadly frame your aims for the study, or as an outline for your interview guide. Some popular theoretical frameworks include:

Health Belief Model- The Health Belief Model is designed to predict health-related behaviors by assessing how factors such as perceived barriers/benefits, perceived threat, self-efficacy, and cues to action work together to influence the likelihood of engaging in a health behavior (Rosenstock, 2005). An example of using this framework can be found in my mixed-methods study of physicians’ influence on veterans’ decision to use acupuncture (Halpin et al., 2014).

The Theory of Planned Behavior- The Theory of Planned Behavior outlines connections between attitude, subjective norm (the belief of whether people approve of a particular behavior), and the patient’s perceived control—and how these factors influence the patient’s intention and behavior. An example of this theory in use is a study of an educational program meant to reduce salt intake in persons at risk for hypertension (Rahimdel et al, 2019).

Information, Motivation, Behavioral Skills Model- The Information, Motivation, Behavioral Skills Model was designed to understand behavioral change through examining (1) the patient’s knowledge about the behavior, (2) their motivation to perform the behavior, and (3) if they have the behavioral skills necessary to perform the new behavior (Fisher & Fisher, 2002). An example of using this theory can be found in my evaluation of a patient education program for patients with multiple myeloma (Halpin & Konomos, 2020).

Patient-Reported Outcomes

If Doc Melhorn created a clinical trial, he would likely select study endpoints based on his years of experience—without ever consulting a patient. A more modern approach however attempts to incorporate the patient, selecting study outcomes that patients themselves find important through a process of concept elicitation followed by cognitive interviewing (Patrick et al., 2011a; Patrick, et al., 2011b). Concept elicitation interviews are often completed through either individual interviews or focus groups and contain open-ended questions about the patients’ experience with their condition (Brédart, et al, 2014). After identifying key concepts from the concept elicitation interviews, an initial drafted questionnaire can be created then reviewed with patients for clarity and appropriateness using a cognitive interview (Brédart et al, 2014). During the cognitive interview, patients may be asked to “think aloud”, voicing their inner monologue, as they read through the questions followed by specific questions about the created measure such as, “Is this question reflective of the way you are experiencing your condition?” The same process is applicable when creating and evaluating patient education tools—designing a tool and iteratively assessing how the patient interacts with the education. 

Collecting and Analyzing Data

Artists, like Norman Rockwell, have a wide variety of materials they can select to illustrate their story—just as qualitative researchers have a variety of tools to work with. Yet, most qualitatively-based studies in patient education apply content analysis—e.g., counting the number of times that concepts emerge from the data. However, I encourage researchers in this area to seek out novel ways of engaging with patient education research. Some methods include using web-based platforms to share screens and walk-through educational materials and analysing data from online forums. Furthermore, the US Food and Drug Administration has pointed to a variety of methods for engaging patients, including direct observation, and using drawing to elicit concepts of interest (FDA, 2019).

Examining naturally occurring data is a particularly fertile area for exploration. Imagine, instead of asking patients to reflect on the education they received, observing how the education influences their behavior. Conversation analysis is a powerful, yet little-used technique for studying social interactions. In a recent pair of publications, my colleagues and I provided a primer for using conversation analysis in patient education (Halpin et al., 2021a) followed by a publication applying the technique for examining how patients, caregivers, and nurse educators incorporated educational videos into their in-person clinic visits (Halpin et al., 2021b). In the former example, patients referenced the video to demonstrate they had viewed them and had gained knowledge concerning their treatment plans—while nurses referenced the videos within context of the upcoming information they planned to introduce.

Special Populations

Researchers should consider any special characteristics of their intended audience when engaging patients in patient education research. For example, patients’ native language, cultural background, and their health status impact their ability to engage with educational materials are all important considerations for qualitative patient education research.

For example, persons with dementia constitute a population that is often overlooked in patient education—the assumption being that these individuals are unable to provide accurate feedback about their subjective experience. Yet, a close examination of ethnographic work reveals that persons with dementia often act in a purposeful way, suggesting they are able to accurately convey their experiences (Sabat, 2018).

Final Thoughts

Here I have touched on some key components of patient education research including theoretical frameworks, patient-reported outcomes, collecting and analyzing data, and considerations for special populations—but this is far from an exhaustive review. For further reading, it is worth exploring the journals Patient Education and Counseling, The Patient: Patient-Centered Outcomes Research, and The Journal of Patient Experience.

References

Brédart, A., Marrel, A., Abetz-Webb, L., Lasch, K., & Acquadro, C. (2014). Interviewing to develop patient-reported outcome (PRO) measures for clinical research: Eliciting patients’ experience. Health and Quality of Life Outcomes, 12(1), 1-10.

Food and Drug Administration. (2019). Patient-focused drug development: Methods to identify what is important to patients. Guidance for industry, food and drug administration staff, and other stakeholders. Retrieved January 24. 2021, from https://www.fda.gov/regulatory-information/search-fda-guidance-documents/patient-focused-drug-development-methods-identify-what-important-patients-guidance-industry-food-and

Fisher, J. D., & Fisher, W. A. (2002). The information-motivation-behavioral skills model. Emerging theories in health promotion practice and research: Strategies for improving public health, 1, 40-70.

Gerteis, M., Edgman-Levitan, S., Daley, J., & Delbanco, T. L. (1993). Through the patients’ eyes: Understanding and promoting patient-centered care. Jossey-Bass.

Halpin, S. N., Konomos, M., & Roulston, K. (2021a). Using applied conversation analysis in patient education. Global Qualitative Nursing Research, 8, 1-11. https://doi.org/10.1177/23333936211012990

Halpin, S. N., Konomos, M., & Roulston, K. (2021b). Using conversation analysis to appraise how novel educational videos impact patient medical education. Patient Education and Counseling. Online first, 11 November 2021. https://doi.org/10.1016/j.pec.2021.11.012

Halpin, S. N., & Konomos, M. (2020). An iterative formative evaluation of medical education for multiple myeloma patients receiving autologous stem cell transplant. Journal of Cancer Education, 1-9.

Halpin, S. N., Huang, W., & Perkins, M. M. (2014). Physicians’ influence on veterans’ decision to use acupuncture. Patient Education and Counseling, 97(2), 211-215.

Mead, N., & Bower, P. (2000). Patient-centredness: A conceptual framework and review of the empirical literature. Social Science & Medicine, 51(7), 1087–1110. https://doi.org/10.1016/s0277- 9536(00)00098-8

Patrick, D. L., Burke, L. B., Gwaltney, C. J., Leidy, N. K., Martin, M. L., Molsen, E., & Ring, L. (2011a). Content validity—establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: part 1—eliciting concepts for a new PRO instrument. Value in Health, 14(8), 967-977.

Patrick, D. L., Burke, L. B., Gwaltney, C. J., Leidy, N. K., Martin, M. L., Molsen, E., & Ring, L. (2011b). Content validity—establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO Good Research Practices Task Force report: part 2—assessing respondent understanding. Value in Health, 14(8), 978-988.

Rahimdel, T., Morowatisharifabad, M. A., Salehi-Abargouei, A., Mirzaei, M., & Fallahzadeh, H. (2019). Evaluation of an education program based on the theory of planned behavior for salt intake in individuals at risk of hypertension. Health Education Research, 34(3), 268-278.

Rosenstock, I. M. (2005). Why people use health services. The Milbank Quarterly, 83(4).

Sabat, S. R. (2018). Qualitative methods enhance our understanding and treatment of people with Alzheimer’s disease. In Situating qualitative methods in psychological science (pp. 72-84). Routledge.