Stepping-up digital health in patient registries

August 20, 2018
Jennifer Christian, PharmD, MPH, PhD, FISPE

From mobile apps and wearables to smartphones and sensors, digital health is on the rise. Powerful technologies capturing data continuously. Monitoring patients remotely. Relaying real-world insights at scale. Allowing us to reimagine evidence generation. 

But how can researchers make the best use of these advances to reliably support data collection? There are many factors to consider in this fast-evolving landscape and very little guidance for decision making. 

In collaboration with the Agency for Healthcare Research and Quality (AHRQ), we’ve been exploring the opportunities for adopting digital health in registries. We’ve looked at mHealth, eHealth, social media and the Internet of Things to understand the current use of digital technologies, their strengths and limitations, their promising applications for the future, and how to determine their value.

A digital checklist for registries

For researchers considering a digital approach, this work suggests the importance of hearing from patients, future proofing against technology obsolescence, and making digital health a primary rather than additive solution. The process should start by asking the right questions to be certain that digital is a valid way forward. 

  1. What do we hope to accomplish? Identify the reason for incorporating digital health in the study. 

  2. How usable is the device or approach? Understand the likelihood of patient engagement and benefit, whether technical support is available if needed, and whether a plan is in place with the physician and patient for integration into registry operations.

  3. Can we deal with the data? Determine the level of comfort with data provenance, the geographic implications for storage and analysis, and plans for how the data will be securely captured, stored and analyzed to meet relevant regulatory requirements.

  4. Will the technology stand the test of time? Establish the availability of ‘open source’ vs. proprietary-only support, the risk of support being withdrawn, the technology’s maturity and the implications of updates, and the existence of standards for usage.

As the capabilities of digital health continue to expand, leaders are envisioning a healthcare landscape transformed by patient-generated data. By investing now to develop the right skill sets and methodologies to leverage these technologies effectively, researchers can be ready to optimize the next decade of digital opportunities for data collection in registries.

To find out more about utilizing digital health in registries, download “21st Century Patient Registries: Addendum to Registries for Evaluating Patient Outcomes: A User's Guide, 3rd Edition.”

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