blog May 8, 2019
Language Matters - Bridging the Health Literacy Gap
Nearly 90 million people in the U.S. have difficulty understanding and acting upon health information, which affects their ability to make informed healthcare decisions. Health literacy affects an array of medical decisions, from dietary choices, to major decisions like which cancer treatment plan to pursue. People everyday make decisions about their health or the health of a loved one, but 90% of adults have a hard time utilizing the health information provided in healthcare facilities, by the media, and available in communities. The ability to obtain, process and understand health information to make appropriate (and often difficult) decisions is known as health literacy.
Health literacy affects individuals on many levels, from their ability to navigate the healthcare system, fill out complex health forms, find providers and services, and engage in self-care. If patients and their families cannot understand health information, then attempts to improve their quality of care, introduce new treatment options, and the ability to act upon this information becomes increasingly difficult.
Barriers to clinical trial participation
Health literacy is a key barrier to clinical trial participation. Patients often struggle to understand and make decisions about research participation or are unaware that other options exist. The more patients and healthcare providers understand key terminology, the more we can empower informed decision-making and make clinical research more relevant. To help in this endeavor we’ve collected a list of key terms that we often use and hear in the health and medical space, and in discussions of clinical trials. It’s our hope that this knowledge will help patients and providers understand their options and advance access to research for all.
The glossary below contains words and phrases related to clinical trials and healthcare. The definitions are tailored to the work we do at Javara.
Integrated Research Organization
A clinical research delivery model that better connects key stakeholders, integrates clinical trials within patient care, optimizes shared value, and operates with the patient at the center. An IRO connects healthcare data, pharma, community physicians, and patients and is therefore embedded into the clinical research experience, and your healthcare experience. This means you can learn more about clinical research studies from your doctor as one of your healthcare options. We remove clinical trial barriers for biopharma, health systems, clinicians, and patients, resulting in increased trial participation, better health outcomes, and improved financial viability.
Health outcomes of a group of individuals. Groups are often geographic populations like nations or communities. Population health addresses the health needs of a group and brings significant health concerns and diseases into focus. By understanding and aligning with your community’s needs, we can crowdsource more of the right clinical trials to help our healthcare partners offer you and your neighbors more variety. At Javara, we engage the entire healthcare system in clinical research by aligning with population health needs and other strategic initiatives.
Healthcare Ecosystem- A network of interconnected stakeholders that includes patients, physicians, pharmaceutical companies, and CROs. By focusing on the healthcare ecosystem, Javara aims to make clinical research more efficient, relevant, and accessible.
CRAACO stands for Clinical Research as a Care Option. CRAACO is a way of connecting patients with clinical trials as a part of their healthcare continuum. Javara is working to improve access to clinical trials for patients through the deployment of CRAACO within healthcare partners.
A healthcare delivery model in which providers, including hospitals and physicians, are paid based on the patient’s health outcomes. Value-based healthcare differs from a fee-for-service approach in which providers are paid based on the amount of healthcare services they deliver. With a shared focus on the quality of each patient’s care experience, our IRO model supports and aligns with value-based healthcare systems.
The process by which a patient learns about and understands the purpose, benefits, and potential risks of medical intervention for a clinical trial. Ensures potential research participants are aware of important details about a study so that each person can make an informed choice about participating. At Javara, we carefully walk the participant through the informed consent process and thoroughly explain what will occur during the clinical trial, so the participant feels confident in understanding the purpose, benefits, and potential risks.
Clinical Trial Navigators (CTNs)
Clinical trial navigators work alongside providers and patients (in-person and remotely) to increase participation in clinical trials and reduce the administrative burden traditionally associated with conducting clinical trials.