Exploring the Nuances of Patient-Reported Outcome Methods: Insights from the 24th Annual ISOQOL Conference

In the dynamic realm of Clinical Outcomes Research, one thing remains constant: the patient's perspective is paramount. Yet, how we capture this perspective is evolving. This year’s International Society for Quality of Life Research (ISOQOL) Annual Conference offers an invaluable opportunity to delve deep into these emerging methods.

We pridefully announce that Louise Humphrey, Director of Clinical Outcome Assessments at Clinical Outcomes Solutions (COS), has been selected to share her groundbreaking research at this esteemed gathering. Her presentation, titled “Is Newer Always Better? Comparing Traditional and Innovative Methods to Generate a Patient-Centred Conceptual Model,” is slated for the distinguished Cutting Edge Research Plenary Session.


A Closer Look at the Research

As the demand for developing new patient-reported outcome (PRO) measures swells, there's a simultaneous call for effective and efficient methods. Louise’s study seeks to address this challenge, comparing three distinctive approaches for explorative, concept elicitation research:

  1. Face-to-face concept elicitation interviews: This traditional method involves in-person patient discussions, diving deep into their experiences and perspectives.

  2. Social media review: A newer, digital age approach, this method scours social media platforms for organic patient discussions and insights.

  3. Online Group Concept Mapping (GCM): This mixed-method approach captures data in an organized, conceptual framework, offering a structured yet digital way to gather patient input.

By generating disease conceptual models based on each approach, the study offers a comparative lens on the depth and breadth of data each method can capture.


Key Takeaways

While each method showcased its strengths, it also came with its own set of limitations. Traditional face-to-face interviews, for instance, provided an unparalleled depth, while the digital methods, especially the social media reviews, offered a broader, perhaps more candid perspective, unfiltered by the presence of a researcher. The Group Concept Mapping, being structured, brought methodological rigor to the digital realm.

The conclusion? There isn’t a 'one-size-fits-all' solution. The best approach depends on the context of the research, the nature of the disease, and the demographic of the patient population.

Louise’s study paves the way for a more informed choice of methodology in developing new PRO measures. As we await her presentation at the ISOQOL Conference, the anticipation underscores the industry’s eagerness to innovate and adapt, ensuring the patient's voice remains at the core of all endeavors in Clinical Outcomes Research.

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Enhancing Patient-Reported Outcome Measures: Introducing the Companion Guide

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Reflecting on ISPOR Boston 2017: An Engaging Endeavour in Clinical Outcomes Research