As technology continues to evolve, there is a widening divide that disproportionately inhibits people of color, low-income households, people with disabilities, and older adults from digital inclusion in many areas of life. The National Digital Inclusion Alliance defines this digital divide as “the gap between those who have affordable access, skills, and support to effectively engage online and those who do not.” Nowhere is this digital divide more apparent than in clinical trials, where some participants have more technical difficulty reporting patient reported outcomes than others.
What are patient reported outcomes?
Patient reported outcomes (PROs) are the self-reported status of a patient’s condition that comes directly from the patient without a healthcare provider’s interpretation. PROs that are collected in clinical trials can provide intrinsic evidence of the risks and benefits of treatment to help promote shared decision making, evaluate symptoms, and provide timely care tailored to individual needs. Most of these assessments use some sort of digital platform.
Barriers to participation in PRO completion, such as lack of digital skills, limited access to technology, disability, health literacy, language, and cultural requirements, should be addressed to ensure the research is accurate, inclusive, equitable, and meets the needs of diverse groups. This is the first in a three-part series that will explore some of these barriers in greater detail.
Barriers to digital inclusion
Digital inclusion is the ability to use digital devices, like computers, smart phones, or the internet. But a lack of digital skills isn’t the only barrier people face. In a recent study by Pugh et. al., 24.7% of participants declined to complete the PROs for various oncology trials and 62.2% of the participants who agreed to the PRO component declined electronic PRO capture. Most of those who declined the electronic PRO were older or undereducated.
Many PRO measures are developed with limited patient input and may not address concepts or challenges that matter to underserved groups. It’s estimated that 37% of the world’s population are digitally excluded, with older people, people with low incomes, and other underserved groups most likely to be affected.
A digitally inclusive community seeks to develop services that meet all user needs. Systems designed to accommodate people with limited mobility, visual impairment, learning disabilities, or inadequate technology skills are a good start in minimizing some of these barriers. But some people may simply need physical help for things like holding a pen, turning pages, or using a keyboard.
Why it matters
PROs are increasingly being implemented in value-based healthcare activities. By its very nature, value-based healthcare demands a person-centered view of care to drive improvements in the health of individuals and populations.
At Syneos Health Communications, this is something we’ve long known. That’s why last year we launched the Patient Voice Consortium, a cross-functional hub that combines PROs with patient advocacy, storytelling, behavioral science, compliance, and health policy capabilities to put “patient voice” at the forefront of innovation. The Patient Voice Consortium strives to eliminate disparities in healthcare through its focus on diversity, equity, and inclusion. These efforts help accelerate drug development by incorporating the voice of diverse and multicultural populations into every aspect of the process.