The strengths and historical dominance of quantitative research in the health care domain is well-established, but the importance of rigorous qualitative research as both a complement to, and a mechanism for, augmenting quantitative methods is increasingly being recognized and used across health-related disciplines. While patients and their advocates may engage in and respond to the priorities and mechanisms under consideration in a value-based care model, upfront qualitative research conducted directly with these stakeholders is needed to generate both a baseline understanding of the patient perspective and to identify the appropriate themes and domains of interest. Given the growing emphasis on putting the patient at the center of policy development and value assessment, qualitative research has an important place in this process.
The gold standard of evidence generation is “hard” data gathered through randomized controlled trials, economic models, or retrospective database studies. The reason for this is easy to understand, as specific outcomes, such as efficacy, safety, and cost, can be quantified. Despite the strengths and historical dominance of quantitative research in the health care domain, the importance of rigorous qualitative research as both a complement to, and a mechanism for, augmenting quantitative methods is increasingly being recognized and used across health-related disciplines.1-6
What is Qualitative Health Research?
First developed and used by social scientists, qualitative health research involves the collection and systematic analysis of nonquantitative (ie, non-numerical) data about individuals’ experiences of health, illness, behaviors, and engagement with the health care system—the “soft” data. As noted by Braun and Clarke, “Qualitative research not only gives entry to patient perspectives, but also offers a rich range of methods to explore anything from health policy to doctor-patient interactions.”7 In health research, these methods include data collected through first-hand observation, ie, in-depth interviews, surveys, and focus groups, as well as through ethnographic observation and review of records, journals, or logs—with one common thread: a focus on the social and experiential aspects of health care.
While standard quantitative approaches can identify trends, patterns, and advanced metrics, these approaches are limited in their ability to represent the experiences, perspectives, and opinions of stakeholders in health care, be they patients, health care providers, payers, policymakers, or caregivers. Quantitative approaches may not fully capture or illuminate the importance that stakeholders place on innovative medical technology beyond typical clinical or economic impacts. While new treatments, such as monoclonal antibodies for rheumatoid arthritis, may provide additional quality-adjusted life-years to a patient or may be cost-effective over the standard of care, patient preferences for ease of administration, convenience, and ability to maintain activities of daily living are often considered secondary to these end points. In fact, the true value a therapy offers may be underestimated if these other factors are not investigated thoroughly.8
Quantitative studies have several limitations that can be addressed or further informed by qualitative research. Chief among them is that quantitative research begins with an a priori hypothesis based on previous understanding or assumptions about the issues. Perspectives on the potential value of a treatment or therapeutic intervention can be tested in a survey based on previously published trial data. However, such understandings may be misguided in real-world application due to the constraints of the trial itself. For example, researchers may assume that stakeholders value aspects of treatment such as prolonged survival or efficacy above all else based on clinical trial end points, and thus weigh such aspects more heavily, when in reality stakeholders may value other attributes associated with treatment, such as the ability to work or resume activities of daily living, to live pain free, or to attain a life goal. Without allowing these additional topics to emerge through qualitative research prior to quantitative study design, the planned quantitative research may omit areas of critical importance.
Finally, quantitative research is limited in its capacity to fully capture the nuance of the phenomena it is researching. Put simply, quantitative research can answer questions of “what,” whereas qualitative research can answer questions of “why” and “how.” Such aspects of value for stakeholders are more easily discovered through qualitative methods that help to provide a deeper, more holistic understanding of treatment, its impact, and its potential value. In this manner, qualitative research provides valuable context to supplement the results of quantitative research, allowing for a more effective application of research in the real world.
In April’s issue of the Journal of Clinical Pathways, Schmidt et al argued for involving the “patient voice” in the development of value-based oncology care.9 While patients and their advocates may engage in and respond to the priorities and mechanisms under consideration in a value-based care model, without the upfront qualitative research conducted directly with these stakeholders—to generate both a baseline understanding of the patient perspective and to identify the appropriate themes and domains of interest—the starting point for the patient voice, and for patient involvement, may already be severely constrained to only a few areas identified by the policymakers themselves.
Given the importance of putting the patient at the center of policy development and value assessment, qualitative research has an important place in this process, as described in the following examples.
Generating Qualitative Data to Help Inform Health Care Decision-Making and Policy
Using Qualitative Research to Inform Provision of Care
Qualitative research can help researchers understand the various impacts of integrating a new health technology into clinical practice. For example, a new digital medicine in the behavioral health space may provide promising insights into patient behaviors and medication-taking practices. However, in transitioning such innovative technologies from controlled settings such as clinical trials to actual real-world practice, little is known about how contextual or situational factors in the broader clinic ecosystem may facilitate or impede adoption and uptake. Enter qualitative research: using approaches from implementation science, May et al sought to understand clinic processes, workflows, and competing priorities through in-depth interviews with health care practitioners.10 Bauer et al define implementation science as “the scientific study of methods to promote the systematic uptake of research findings and other evidence-based practices into routine practice, and hence, to improve the quality and effectiveness of health services.”11 Employing such a methodology can shed light on best practices, as well as persisting barriers, to the acceptance of new digital medicines and health technologies among diverse stakeholders.
Using Qualitative Research to Inform Quantitative Data Collection
Qualitative research can also be a valuable tool for quantitative data collection. In a combined conjoint analysis and discrete choice experiment study designed to investigate the value of progression-free survival in metastatic breast cancer (mBC) published by in 2019, focus groups were first conducted with mBC patients, oncologists, and oncology nurses to identify factors each prioritized and valued about treatment for the disease and why. These data, along with parameters extrapolated from the peer-reviewed literature, were then used to inform the selection and development of attributes for the discrete choice experiment.12,13 The study found that while patients face complex decisions and tradeoffs about treatment, their goals for treatment may not always align with clinicians’ goals, and that focusing only on overall survival will likely fail to capture attributes of treatment that are important to the ultimate arbiter of treatment value, the patient.13
Using Qualitative Research to Inform Health Policy
Finally, qualitative research is also an important tool to inform health policy and can highlight the voice of the patient for policymakers. Patient-centered research—in which patients and/or patient advocacy organizations are engaged throughout the research process—fosters partnerships to incorporate the patient viewpoint when developing therapeutic interventions as well as designing, informing, and implementing health policy.6,14 For example, qualitative research conducted with patients diagnosed with non-small cell lung cancer highlighted patients’ own determinants of value, including personalized care, affordability of treatments, convenient treatment administration, and tolerable side effect profiles.15,16 The World Health Organization is also increasingly incorporating qualitative research to inform health systems guidance and a more equitable provision of health care.17 One study conducting in-depth interviews with policymakers around the world has highlighted barriers and facilitators to the adoption of gender-neutral human papillomavirus (HPV) vaccination, including vaccine hesitancy as well as inequities experienced by at-risk and marginalized communities.18-20 Such findings can be adapted and tailored to other countries to aid in gender-neutral HPV vaccination policy development and program implementation.
While it is easy to view such methods as secondary to quantitative data collection, qualitative methods should not be overlooked in their ability to provide valuable insight into patient experiences, provider priorities, and value measurement of health innovations. In a health services research environment dominated by epidemiologists, economists, statisticians, and other experts in quantitative research methods, qualitative research may not offer the certainty many researchers desire in the form of numbers, percentages, means, etc, yet, without investing in qualitative research, we are likely to work under misguided assumptions, fail to understand the perspectives of key stakeholders such as patients, and limit our understanding of value to a few select parameters.
1. Campbell JA, Ezzy D, Neil A, et al. A qualitative investigation of the health economic impacts of bariatric surgery for obesity and implications for improved practice in health economics. Health Econ. 2018;27(8):1300-1318. doi:10.1002/hec.3776
2. Johnson M, O’Hara R, Hirst E, et al. Multiple triangulation and collaborative research using qualitative methods to explore decision making in pre-hospital emergency care. BMC Med Res Methodol. 2017;17(1):11. doi:10.1186/s12874-017-0290-z
3. Curry LA, Nembhard IM, Bradley EH. Qualitative and mixed methods provide unique contributions to outcomes research. Circulation. 2009;119(10):1442-1452. doi:10.1161/CIRCULATIONAHA.107.742775
4. Bradley EH, Curry LA, Devers KJ. Qualitative data analysis for health services research: Developing taxonomy, themes, and theory. Health Serv Res. 2007;42(4):1758-1772. doi:10.1111/j.1475-6773.2006.00684.x
5. Vass C, Rigby D, Payne K. The role of qualitative research methods in discrete choice experiments: A systematic review and survey of authors. Med Decis Making. 2017;37(3):298-313. doi:10.1177/0272989X16683934
6. Rolfe DE, Ramsden VR, Banner D, Graham ID. Using qualitative health research methods to improve patient and public involvement and engagement in research. Res Involv Engagem. 2018;4(1):49. doi:10.1186/s40900-018-0129-8
7. Braun V, Clarke V. Novel insights into patients’ life-worlds: the value of qualitative research. Lancet Psychiatry. 2019;6(9):720-721. doi:10.1016/S2215-0366(19)30296-2
8. Buckley CD, Simón-Campos JA, Zhdan V, et al. Efficacy, patient-reported outcomes, and safety of the anti-granulocyte macrophage colony-stimulating factor antibody otilimab (GSK3196165) in patients with rheumatoid arthritis: a randomised, phase 2b, dose-ranging study. Lancet Rheumatol. 2020;2(11):e677-e688. doi:10.1016/S2665-9913(20)30229-0
9. Schmidt T, Riposo J, Valuck T, Westrich K, Basch E, McClellan M. Patient voices in value-based cancer care: Priorities for the Biden administration. J Clin Pathways. 2021;7(3):60-63. doi:10.25270/jcp.2021.04.00002
10. May SG, Hadzi Boskovic D, Roach M, Huber C, Shafrin J, Forma F. Understanding the adoption of digital medicines in behavioral health clinic settings: An implementation science approach. American Society for Clinical Psychopharmacology (ASCP) Conference; May 26-29, 2020; Virtual.
11. Bauer MS, Damschroder L, Hagedorn H, Smith J, Kilbourne AM. An introduction to implementation science for the non-specialist. BMC Psychol. 2015;3(32). doi:10.1186/s40359-015-0089-9
12. May SG, Chung AH, Vania DK, et al. Abstract P4-20-02: Value of cancer care for metastatic breast cancer patients and providers. Cancer Res. 2017;77(suppl 4):P4-20-02.
13. MacEwan JP, Doctor J, Mulligan K, et al. The value of progression-free survival in metastatic breast cancer: Results from a survey of patients and providers. MDM Policy Pract. 2019;4(1):2381468319855386. doi:10.1177/2381468319855386
14. Balch A, Lakdawalla DN. The case for patient-centered assessment of value. Health Affairs blog. May 8, 2017. Accessed April 29, 2021. https://www.healthaffairs.org/do/10.1377/hblog20170508.059962/full/
15. May-Slater S, Huber C, Silverstein A; Innovation and Value Initiative. Techincal report: Patient perspectives on value in the treatment of non-small cell lung cancer. November 2018. Accessed April 29, 2021. https://www.thevalueinitiative.org/wp-content/uploads/2018/11/IVI.126_Technical-Report_FINAL.pdf
16. May SG, Huber C, Silverstein AR, et al. HSR19-099: Harnessing the voice of patients with genetic mutations in NSCLC treatment. J Natl Compr Can Netw. 2019;17(3.5).
17. Lewin S, Glenton C. Are we entering a new era for qualitative research? Using qualitative evidence to support guidance and guideline development by the World Health Organization. Int J Equity Health. 2018;17(1):126. doi:10.6004/jnccn.2018.7208
18. Varga S, May SG, Morais E, et al. Lack of clinician knowledge of human papillomavirus (HPV) vaccination to prevent HPV-related cancers in men: An interview study. J Clin Oncol. 2019;37(suppl 15):e18273. doi:10.1200/JCO.2019.37.15_suppl.e18273
19. Graf M, Varga S, May SG, et al. Barriers to gender neutral HPV vaccination uptake in at-risk and marginalized communities around the globe. American Public Health Association (APHA) Annual Meeting and Expo; October 24-28, 2020; Virtual.
20. Shrestha A, Huber C, May SG, et al. Countering vaccination hesitancy in gender-neutral human papillomavirus vaccination programs: perspectives and experiences of experts in newly adopting countries. European Society for Paediatric Infectious Diseases (ESPID); 2019; Ljublana, Slovenia.