A qualitative study of design stakeholders’ views of developing and implementing a registry-based learning health system

Published in

  • 14 April 2020
  • Journal article

Contributors

Learning health systems have potential to enable better partnerships between patients and health professionals, but may face challenges

Challenges and opportunities can both arise in seeking to use “big data” to facilitate better partnerships between patients and health professionals, improve the quality of healthcare, and generate knowledge.

 

The concept of learning health systems, where the data generated through routine care is used to produce knowledge, has become increasingly popular. This paper explores one US example of a learning health system, from which the authors conclude that learning health systems are rich in potential but may face technical and social challenges in realising their ideals.

Focused on cystic fibrosis, the system enables patients to enter their own data. This is then combined with routine clinical information, feeding a shared dashboard that can be viewed by patients and health professionals at the same time with the aim of facilitating better partnerships. The data can also be used to support improvements in care and research.

This study showed that those involved in the design of the learning system were in consensus that the goal of enabling patients and clinicians to become confident, competent, and equal partners who can share decisions was a very valuable one. But achieving that goal was challenging. Technical problems, including interoperability between different information systems and avoiding information overload, were not straightforward to resolve. Also challenging was the attempt to shift the nature of the patient-clinician relationship, particularly in the time-challenged context of busy clinics. Some concerns were also expressed about the potential for data collected by the learning system to be used for surveillance purposes.

To develop these insights, the authors interviewed  individuals involved in the design, implementation, and evaluation of a learning health system for cystic fibrosis in the US.

Why it matters

Learning health systems use data and analytics from patients’ electronic health records and other digital resources to identify opportunities to improve the quality of care. However, research into setting up learning systems has been limited. This study aims to address this gap, producing findings that may help others developing learning systems.

 

Read the full article

Licensed under Creative Commons

These symbols show that the contents of this page are published under a Creative Commons licence called CC-BY-NC-ND 4.0.

It means that you’re free to reuse this work. In fact, we encourage it. We want our research to reach people who can help improve quality and safety in healthcare. But we do have a few rules:

  • Make sure you acknowledge The Healthcare Improvement Studies Institute (THIS Institute) as the creator and link back to this webpage.
  • You can’t sell this work for a fee, or use it for any activity that generates revenue without our permission.
  • Please don’t distribute a modified version to others without our permission.

You can read the fine print about the licence on the Creative Commons website. It’s meant to help us keep the integrity of our work and stay true to our values.

But ultimately we want our work to have impact. So if you’ve got a use in mind but you’re not sure it’s allowed, just ask us at enquiries@thisinstititute.cam.ac.uk