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Lived Experience is Data

Data is never data alone. It exists through an interpretation

Daily Remedy by Daily Remedy
April 19, 2023
in Contrarian
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Lived Experience is Data

Creative Commons

Data is never data alone. It exists through an interpretation. The two are forever connected: data and its interpretation. We miss this when we’re arguing over the numbers, but what we interpret defines how we react to the data.

The opioid litigation settlements have garnered gargantuan amounts of funds for communities across the nation. But when spread out and averaged over time, the numbers thin out. Critical decisions about how to spend the money will determine how effective the settlement dollars prove to be. This requires, above all else, correctly interpreting the data.

We need the lived experiences of patients. Their interpretations make sense out of the data. Think of this way: numbers tell us about a specific event. But they never explain how multiple events relate. Those relationships come from lived experiences.

If we take two rural towns, both experiencing layoffs, and measure overdose rates, we’ll likely find similar metrics based on similar demographics. That only tells us the result of how the overdose crisis affected both towns. It doesn’t tell us how addictions are likely to form or what patterns of behavior are likely to lead someone down the path of addiction. Those are the lived experiences.

Lived experiences tell us the story. Data points tell us individual events. Those events are meaningless without the context of a narrative. In engineering parlance, we call this thinking in systems.

In systems, we focus on the interactions, the connections between events. That’s the actual story of addiction: a person’s relationship with his or her community. Each town has a different array of interactions that lead to distinct patterns of behavior. Within this complex framework, a patient with substance use dependency can turn into an addict. Just as well, an addict can turn into a patient with substance use dependency. There’s no data point that explains it all, because it can’t be explained through numbers.

We need stories. We need to hear from those most affected. Their stories aren’t just important to hear, they’re relevant for making critical decisions, such as deciding whether to invest in more freely available fentanyl strips or to offer more Narcan dispensaries. That decision, as nuanced as it may appear to be, will sway the scales toward fewer addictions. It may seem negligible. But that’s because you lack the lived experiences to see how impactful those subtleties can be.

Those who lived through the opioid crisis proudly carry their stories like scars of honor. Their lived experiences make them subject matter experts. In war, we heed the advice of soldiers because they lived through combat. Their experience becomes their expertise. That’s why we award medals for combat.

It’s time we give the same respect to those with lived experiences in the opioid crisis. Instead, we see these individuals written off as grief stricken or lacking the objective disposition necessary to inform policy decisions. That perspective misses the mark.

Nothing about addiction is objective. Even the clinical metrics we use to measure it are subjective. This is why we struggle to define, diagnose, and treat it. Addiction defies our innate tendency to objectify things in healthcare. Instead of acknowledging this, and looking at addiction through lived experiences, we look for something measurable, even if it’s a poor marker of addiction.

When it comes to money and metrics in the opioid epidemic, we need fewer numbers and more lived experiences. Remember, data is never data alone. It exists through an interpretation.

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Daily Remedy

Dr. Jay K Joshi serves as the editor-in-chief of Daily Remedy. He is a serial entrepreneur and sought after thought-leader for matters related to healthcare innovation and medical jurisprudence. He has published articles on a variety of healthcare topics in both peer-reviewed journals and trade publications. His legal writings include amicus curiae briefs prepared for prominent federal healthcare cases.

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Videos

In this episode, the host discusses the significance of large language models (LLMs) in healthcare, their applications, and the challenges they face. The conversation highlights the importance of simplicity in model design and the necessity of integrating patient feedback to enhance the effectiveness of LLMs in clinical settings.

Takeaways
LLMs are becoming integral in healthcare.
They can help determine costs and service options.
Hallucination in LLMs can lead to misinformation.
LLMs can produce inconsistent answers based on input.
Simplicity in LLMs is often more effective than complexity.
Patient behavior should guide LLM development.
Integrating patient feedback is crucial for accuracy.
Pre-training models with patient input enhances relevance.
Healthcare providers must understand LLM limitations.
The best LLMs will focus on patient-centered care.

Chapters

00:00 Introduction to LLMs in Healthcare
05:16 The Importance of Simplicity in LLMs
The Future of LLMs in HealthcareDaily Remedy
YouTube Video U1u-IYdpeEk
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AI Regulation and Deployment Is Now a Core Healthcare Issue

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Ambient Artificial Intelligence Clinical Documentation: Workflow Support with Emerging Governance Risk

Ambient Artificial Intelligence Clinical Documentation: Workflow Support with Emerging Governance Risk

by Daily Remedy
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Health systems are increasingly deploying ambient artificial intelligence tools that listen to clinical encounters and automatically generate draft visit notes. These systems are intended to reduce documentation burden and allow clinicians to focus more directly on patient interaction. At the same time, they raise unresolved questions about patient consent, data handling, factual accuracy, and legal responsibility for machine‑generated records. Recent policy discussions and legal actions suggest that adoption is moving faster than formal oversight frameworks. The practical clinical question is...

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