Carelon Research impact study: Innovative approaches to gathering the patient perspective
July 2022 | Written by Amanda Marshall
In celebration of the 25th anniversary of Carelon Research Founder’s Day, we’re rolling out a series of articles highlighting some of our most impactful work. These ‘impact studies’ have contributed to the growing evidence base that influence healthcare decision-makers and healthcare policy and practice. They also showcase the diverse service offerings at Carelon Research. Though all our work aims to improve the quality of healthcare, we’re especially proud of our participation in these important studies.
Innovative approaches to gathering the patient perspective
The patient-centered research team at Carelon Research goes beyond numbers to inform meaningful research solutions with rich, in-depth insights. As an organization, we’re able to work across all therapeutic areas with knowledge of what questions to ask, how to ask them, and how to make sense of all that we learn from patients. Carelon Research utilizes a unique mix of expertise, access to claims data, and relationships in the design and conduct of patient-centered research for the purpose of improving patient health and outcomes.
Gathering insight from patients is not a one-size-fits-all activity. In fact, it often takes multiple methodologies to get to the correct or complete answer — and we typically use the Carelon Research claims database as our backbone in this research. Contributing to our evolving data ecosystem, the PCR team helps inform study designs, conducts patient and provider outreach, and then analyzes those data into meaningful knowledge. Our collaborative and passionate research professionals are dedicated to uncovering actionable insights.
Utilizing the robust data found in the Carelon Research database, we can target patients based on characteristics such as medication use, procedure history, along with other factors, and directly recruit into multiple research design studies using in-house contact information via mail, phone, and e-mail.
The PCR team at Carelon Research is focusing constantly on innovation in patient access, utilizing digital strategies such as wearables, online research panels, and virtual interviewing systems to name a few. Data collected from patients in surveys, interviews, and other patient-centered research activities can be linked with claims data, clinical data, laboratory data, and prospective data, to provide a robust, industry-unmatched research response.
The following case studies demonstrate the innovative approaches we’ve taken, specifically when addressing more sensitive subjects — patients and topics — in a post-pandemic world.
Case Study 1: In this hybrid study, Carelon Research (formerly HealthCore) combined patient-centered and non-patient centered research designs to better understand reasons for switching or discontinuing use of prior antidepressant (AD) medications.
In “Antidepressant Discontinuation and Treatment-Emergent Sexual Dysfunction (TESD) among Patients with Major Depressive Disorder (MDD): A Hybrid Study Approach for Developing Real-World Evidence – Phase B Patient Survey”, funded by a pharmaceutical company sponsor, Carelon Research aimed to better understand the reasons why patients with major depressive disorder (MDD) continue to use, switch, or discontinue use of their AD medications, including the role that treatment-emergent sexual dysfunction (TESD) plays, from a patient-centered perspective.
This real-world, evidence-based study utilized a hybrid cohort design consisting of a cross-sectional internet survey of adult patients with MDD.
Respondents’ survey data were linked with their healthcare administrative claims data for the 12-month baseline period prior to and including the date of the survey to better understand AD use, including survey-based decisions to continue, switch, or discontinue AD medications.
Respondents were categorized as “Continuers,” “Switchers,” or “Discontinuers” based on their answers to the screening questions. Overall, 900 respondents completed the survey, including 554 (62%) continuers, 298 (33%) switchers, and 48 (5%) discontinuers.
Current and prior AD use and non-use, sexual dysfunction and TESD, drivers of AD switching, and healthcare resource utilization and costs were explored. Based on the patients’ perspectives, we found that healthcare provider recommendations, treatment efficacy, and medication side effects all play an important role in AD continuation, switching, and discontinuation of treatments for MDD.
Major reasons patients gave for switching or discontinuing use of prior ADs were related to treatment satisfaction, efficacy, and the occurrence of side effects. For continuers and switchers, sexual problems were commonly reported, yet often were not discussed with a healthcare provider. Continuers reported the highest rate of sexual dysfunction, while also reporting the lowest severity of depressive symptoms, potentially indicating a willingness to tolerate long-term side effects in exchange for efficacy in this population.
These findings may inform the importance of patient-physician shared decision-making for MDD management, with the goal of minimizing side effects while maintaining treatment effect.
Findings from this study were presented at ASCP 2022. Registration is required.
Case Study 2: In the following qualitative study, Carelon Research utilized phone interviews to gather more accurate patient perspectives on use of breast cancer treatments.
In “Treatment Experiences with CDK4&6 Inhibitors Among Women with Metastatic Breast Cancer: A Qualitative Study”, funded by a pharmaceutical company sponsor, Carelon Research aimed to describe patients’ perspectives on the use of and potential challenges and barriers with adherence or persistence to cyclin-dependent kinase 4 and 6 inhibitors (CDK4&6i’s) to treat metastatic breast cancer (MBC).
This qualitative study consisted of 60-minute, semi-structured telephone interviews with patients with MBC in the U.S. who were either current or recent CDK4&6i users, identified from administrative claims of survey-eligible commercial and Medicare Advantage patients in the Healthcare Integrated Research Database. The telephone interviews were conducted by a trained facilitator using a study-developed interview discussion guide that included topics impacting treatment choice and adherence or persistence. Interviews were audio recorded, transcribed, and thematically analyzed.
Interviews were conducted with 24 study participants. Participants were predominately White, non-Hispanic (96%) with a mean age of 59.5 years. Participants reported a largely positive experience and mentioned very few adherence or persistence issues. They further reported appreciating the ease and convenience of oral oncolytics, copeing with side effects, having strong medical and social support, and experiencing few cost issues.
The few adherence or persistence issues reported by participants contrast with other findings of suboptimal oral oncolytic use. Interview themes indicated several factors that likely contributed to the lack of adherence or persistence issues: trusted relationship with oncologist, belief in importance of medication, positive medication views, strong medical and social support, and minimal personal drug cost.
Future research should focus on whether and how much these factors impact adherence or persistence in more diverse populations. If adherence or persistence issues are identified in these populations, then it would be appropriate to study the development of interventions that target factors associated with better adherence or persistence.
The full publication is available in Patient Preference and Adherence (2021).
Through patient-centered research at Carelon Research, we are delivering actionable evidence to better guide current disease management and assist in the development of new therapeutic and biomedical technologies.
We provide access to a level of patient information not found in other large-scale sources of health data, including medical and pharmacy claims, electronic medical records, and disease registries. We leverage our data ecosystem to identify cohorts of interest and generate more meaningful insights through the power of innovative, integrated, patient-centered research.
For more information about our patient-centered research capabilities including qualitative studies, quantitative studies, mixed method studies, panel studies, direct-to-patient studies, PROM development and validation, and survey-based research, visit our Patient-Centered Research page.