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The global market for electronic data capture (EDC) systems was valued at approximately $1.7 billion in 2023 and is estimated to reach $3.81 billion by 2031 [1]. This encompasses a broad range of digital tools designed to replace traditional paper-based data collection methods, thus improving data accuracy and efficiency and streamlining research processes.
Why are electronic data capture systems useful in patient-centered research?
At Vitaccess, we have implemented our proprietary platform, Vitaccess Real TM, as a tool to generate real-world, close to real-time patient-reported data, including efficacy and safety data for treatments received outside of the clinical trial setting. An example is the Vitaccess Real MG patient registry, an initiative launched in 2024 which deploys the Vitaccess Real digital data capture platform to facilitate regular reporting of longitudinal real-world treatment and quality of life data on myasthenia gravis (MG). The aim of Vitaccess Real MG is to generate a database for impactful and streamlined research in MG.
For EDC platforms such as Vitaccess Real to maximize their potential value, they must address two commonly-reported barriers to patient engagement [2]:
- Poor digital literacy
- Concerns about privacy and data security.
If left unaddressed, these could lead to lower participant retention rates and in turn to the collection of incomplete data that is ultimately unsuitable for analysis.
How can these pitfalls be avoided?
To mitigate the impact of lower digital literacy (i.e., the ability to access, understand, and communicate through information technologies) among patient populations, patient-facing applications should be developed, tested, and released according to a patient-centric design philosophy that makes the journey through the app as simple as possible, from the initial onboarding to data collection. At Vitaccess, we have designed study apps and web-based platforms for patients with conditions for which accommodations must be made if the platform is to be accessible and inclusive. We do this by engaging directly with patients and specialists so they can shape the user journey based on their experiences and expertise.
By removing barriers to participation, focusing on patient engagement through inclusive design, and minimizing user attrition, all stakeholders, from the patients themselves to the company conducting the study, stand to benefit.
Ensuring the security and privacy of the information that patients enter into EDC platforms is also of paramount importance. Inadequate protection of a patient’s data erodes their trust, puts their personal information at risk of theft, and can result in hefty fines and legal repercussions if a data breach occurs due to non-compliance with data protection legislation.
To minimize this risk to the greatest extent possible, every component of EDCs collecting health data from participants should be validated according to the same rigorous standards as those used to grant ethical approval for other methodologies of data collection. This reassures patients who will be using the app that their sensitive data will be treated as such, while also guaranteeing that if a data breach were to occur, it would be handled appropriately.
Where do we go from here?
With the ever-increasing proliferation of smartphones and personalized platforms, EDCs offering real-time collection of patient-reported data are here to stay. By addressing the issues outlined in this blog, we can help to ensure that EDCs are an inclusive, accessible and engaging tool for data collection that put the patient’s health and experience first, while reducing the risk of data breaches, guaranteeing privacy, and providing peace of mind.
Interested? Get in touch today at info@vitaccess.com
By Jack Lawrence
