Originally published on January 20th, 2022 by Darcy Flora, PhD & Rachel Byrd. Updated on March 14th, 2022 and most recently on September 13, 2022.
GRYT Health presented research findings from the CONNECT Study during the 63rd Annual Meeting of the American Society of Hematology (ASH) held December 11-14, 2021.
Okay, this is great, but:
- What does it mean?
- What is the CONNECT Study?
- Why is it important that this research was presented at the ASH Annual Meeting?
- What does this mean for you?
What does it mean?
Let’s start at the beginning: patient experience research. Within a healthcare context, patient experience research is research that listens to the patient and caregiver to understand their experiences related to healthcare. The focus of patient experience research can vary. For example, it may focus on the diagnosis experience, the experience making treatment decisions, or day-to-day experiences living with disease. This type of research is collected through surveys, interviews, and group discussions. The end goal of this research is to make healthcare more patient-friendly and can lead to the design of patient-friendly clinical trials, education, or resources.
GRYT Health was created by patients and caregivers to improve outcomes for all people facing a diagnosis through a relentless focus on patient experience. GRYT Health’s research niche is patient experience research. To help improve outcomes through research, GRYT Health serves as a mediator between healthcare organizations and patients and caregivers. We partner with members of the healthcare industry that want to put patients first to help them better understand the patient and caregiver experience so that all aspects of care can be improved.
An image of posters presented at ASH 2021
What is the CONNECT study?
We partnered with Seagen, Ipsos, and oncologists at Tufts Medical Center and Rutgers Cancer Institute of New Jersey to design and conduct the Classical Hodgkin Lymphoma: Real-World Observations from Physicians, Patients, and Caregivers on the Disease and Its Treatment Study. More simply, we refer to the study as the CONNECT Study. The CONNECT Study is the first real-world research study in classical Hodgkin Lymphoma (cHL) that seeks to understand how treatment decisions for cHL are made by surveying physicians, patients, and caregivers. In total, more than 900 individuals participated in the CONNECT Study.
Want to see the ASH CONNECT patient survey research poster?
Classical Hodgkin Lymphoma: Real-World Observations from Physicians, Patients, and Caregivers on the Disease and Its Treatment (CONNECT)–A Cross-Sectional Survey of Patients with Stage III or IV Classical Hodgkin Lymphoma Compared by Age.
198 cHL patients and 61 cHL caregivers from the GRYT Health Cancer Community participated in the CONNECT Study. Each participant completed the 25-minute online survey about their experiences as a cHL patient or caregiver. Questions on the patient and caregiver surveys gathered information about involvement in treatment decisions, where information about treatment was obtained, and information about current health status and quality of life.
Why is it important that this research was presented at the ASH Annual Meeting?
The ASH Annual Meeting is considered the premier event in hematology. To make sure we are on the same page, hematology is just a fancy word for the study of blood and blood disorders. The meeting is attended by more than 25,000 hematology professionals from around the globe and offers an invaluable opportunity for education, research communication, networking, and collaboration with other hematology professionals. Because lymphoma is a blood disorder and because of the significance of the ASH Annual Meeting within the hematology professional community, the CONNECT Study team made it a goal to present our initial findings from the CONNECT Study at the ASH Annual Meeting.
Dave Craig, CEO of GRYT Health, and Gary Nolan, Chief Executive Officer, Colab Health as well as working group leader for The Future of Advocacy for The Advocacy Exchange
Three poster presentations associated with the CONNECT Study were presented. One presentation focused on the treatment decision-making process of physicians and, specifically, how PET/CT scan access, reimbursement, and understanding influence their treatment decisions. Another presentation focused on physician preferences when treating newly diagnosed advanced-stage cHL patients and factors that influence their treatment choices. The third presentation compared factors impacting patient treatment preferences between two age groups of advanced cHL patients.
GRYT Health was most closely involved in the patient survey data presentation, “A Cross-Sectional Survey of Patients with Stage III or IV Classical Hodgkin Lymphoma Compared by Age.” Findings revealed that treatment preferences differed significantly between patients < 40 years of age at diagnosis and patients ≥ 40 years of age at diagnosis. Younger patients prioritized cure and aggressive treatments, while older patients focused on living longer and obtaining a better quality of life. Regardless of age, most participants were willing to deal with short-term risks in exchange for long-term benefits; however, a significantly higher percentage of younger patients were willing to make this exchange. Overall, most participants across both age groups indicated that they discussed short- and long-term side effects with their physicians when talking about treatment options.
What about the caregiver survey? Don’t worry, that data will be presented too. The CONNECT Study yielded a lot of data, and because the CONNECT Study team was still analyzing data from the caregiver survey, we have plans to present these findings at a different, upcoming scientific meeting. We also plan to publish findings from all three surveys in future scientific publications and are discussing ways that this research can be shared with the patient and caregiver community. Those that participated in the CONNECT Study through GRYT Health can expect to receive future email updates related to the research.
What does this mean for you?
Ultimately, patient experience research cannot be conducted without the willingness of patients and caregivers to share their experiences. Thank you to all in the cancer community who have participated in patient experience research with GRYT Health–whether it was part of the CONNECT Study or another study. Your voices are powerful and are leading to improvements in healthcare. For those interested in participating in patient experience research, consider joining The GRYT Project to learn about research that may be relevant to you. More information can be found HERE.
Click on the links below to download the CONNECT Study research posters presented at the ASH Annual Meeting.
A Cross-Sectional Survey of Patients with Stage III or IV Classical Hodgkin Lymphoma Compared By Age
Physician First-Line Treatment Preferences for Stage III or IV Classical Hodgkin Lymphoma
Observations of Physicians on Treatment and Interim PET-Adapted Regimens
