Ethical Challenges During the Move Toward a Learning Healthcare System

With an increased interest in transitioning to a Learning Health Care System (LHCS), there is an urgency to understand the ethical implications associated with the transition. A new study published in eGEMs highlights seven specific ethical challenges faced by respondents as they move towards LHCS. The new study highlights experiences that can provide guidance on relevant ethical issues, and what might be done to resolve them.

The LHCS promises to speed the translation of research to improve patient care by real-time improvement in both the effectiveness and efficiency of care. However, while the process promises plenty of benefits, it also presents several ethical considerations. The researchers conducted the research in partnership with healthcare system leaders to identify, understand and resolve the ethical issues.

The authors conducted 29 semi-structured telephone interviews with leaders within 25 healthcare institutions between October 2014 and February 2015. The respondents were selected using purposive sampling.

Collectively, respondents described 7 ethical challenges associated with the transition toward a model of learning healthcare. The ethical challenges were:

1. Ethical oversight of learning activities
2. Transparency of learning activities to patients
3. Potential tensions between improving quality and reducing costs
4. Data sharing and data management
5. Lag time between discovery and implementation
6. Transparency to patients about quality
7. Randomization for quality improvement initiatives

It is imperative to address the ethical considerations while moving toward LHCS. Some of the more urgent issues that need attention include the continued appropriateness of the research-treatment distinction, policy frameworks for privacy and data sharing, informing patients about learning activities, obligations to share data on quality, and the potential for trade-offs between quality improvement and cost control.

“The experiences of our respondents provide key insights for contemporary efforts to ensure that systems for ethical oversight are aligned with the goals of LHCS,” noted the authors.

An estimated $750 billion is spent in the United States each year on care that is unnecessary, unproven, or wrong. By closely integrating care and research, it would be easier to create more efficient and available opportunities to learn. Nevertheless, if key ethical concerns remain unaddressed, progress will be slowed.

“This is the first project we know of that asks leaders from healthcare systems committed to ongoing learning about the ethical issues they have faced in this effort,” the authors concluded. “As more institutions transition to such systems, and as policymakers work to support these transitions, we hope that the experiences of these institutions will provide guidance on the ethical issues at stake and, in some cases, what can be done to resolve them.”