Changing practice in cystic fibrosis: Implementing objective medication adherence data at every consultation, a learning health system and quality improvement collaborative

GIRLING, Carla, DAVIDS, India, TOTTON, Nikki, ARDEN, Madelynne, HIND, Daniel and WILDMAN, Martin J. (2024). Changing practice in cystic fibrosis: Implementing objective medication adherence data at every consultation, a learning health system and quality improvement collaborative. Learning Health Systems. [Article]

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Abstract

Background:

Medication adherence data are an important quality indicator in cystic fibrosis (CF) care, yet real‐time objective data are not routinely available. An online application (CFHealthHub) has been designed to deliver these data to people with CF and their clinical team. Adoption of this innovation is the focus of an National Health Service England‐funded learning health system and Quality Improvement Collaborative (QIC). This study applies the capability, opportunity, and motivation model of behavior change to assess whether the QIC had supported healthcare professionals' uptake of accessing patient adherence data.

Method:

This was a mixed‐method study, treating each multidisciplinary team as an individual case. Click analytic data from CFHealthHub were collected between January 1, 2018, and September 22, 2019. Thirteen healthcare practitioners participated in semi‐structured interviews, before and after establishing the QIC. Qualitative data were analyzed using the behavior change model.

Results:

The cases showed varied improvement trajectories. While two cases reported reduced barriers, one faced persistent challenges. Participation in the QIC led to enhanced confidence in the platform's utility. Reduced capability, opportunity, and motivation barriers correlated with increased uptake, demonstrating value in integrating behavior change theory into QICs.

Conclusion:

QICs can successfully reduce barriers and enable uptake of e‐health innovations such as adherence monitoring technology. However, ongoing multi‐level strategies are needed to embed changes. Further research should explore sustainability mechanisms and their impact on patient outcomes.

Plain Language Summary

Using Digital Tools to Track Medication in Cystic Fibrosis Care

What is it about?

This research explores the use of CFHealthHub, an online platform that provides real-time data on medication adherence for people with cystic fibrosis (CF). CF is a chronic condition requiring consistent use of inhaled medications to prevent lung damage. However, adherence rates are low, often between 30-50% outside of clinical trials, which compromises health outcomes. CFHealthHub collects data from electronic nebulizers and shares it with both patients and their healthcare teams, allowing them to monitor and discuss adherence during consultations. The study evaluated the effectiveness of a Quality Improvement Collaborative (QIC) designed to support healthcare professionals in adopting CFHealthHub into routine practice. It used a mixed-methods approach, combining web activity data with interviews from healthcare teams across three UK CF centers. Results showed that participation in the QIC reduced barriers to using the platform, such as lack of training or confidence, and increased its uptake. However, challenges remained, such as limited time and resources, which affected full integration into clinical practice.

Why is it important?

Cystic fibrosis is life-limiting, and proper medication use is essential for managing symptoms and extending life expectancy. Despite this, many patients struggle to maintain adherence to their treatment regimens, often due to the complexity and burden of the routine. Current methods for tracking adherence rely heavily on patient self-reports, which are often inaccurate. CFHealthHub offers a solution by providing objective, real-time data that can guide more personalized and effective care. This study demonstrates how integrating adherence tracking into consultations helps address the gap between prescribed and actual medication use. It highlights the importance of training and support for healthcare professionals to successfully adopt such digital tools. The findings are significant for improving CF care, reducing hospitalizations, and enhancing quality of life for patients. Additionally, the study sets an example for implementing similar innovations in other chronic conditions.

Key Takeaways:

1. CFHealthHub offers real-time medication tracking to improve adherence.

2. Quality Improvement Collaboratives help overcome barriers to adoption.

3. Objective data improves discussions between patients and clinicians.

4. Challenges like time constraints still hinder full platform integration.

5. Lessons learned can guide digital health adoption for other conditions.

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