Quantifying Stories for Health Care Reform

By SUSAN LAHEY
Reporter with Silicon Hills News

Is it possible to marry the insights from stories—quantitative data, or data-in-context—with the qualitative world of big data? How do you scale the collection and interpretation of thousands of stories that might contain truths more pithy and authentic than you could ever mine from a survey? And could something that would accomplish that task be the solution health care executives are looking for to achieve meaningful use of health tech data and provide more accountable care? That was the discussion at Tuesday night’s meeting of Nebular Health Tech at People Fund.
Discussion leader Senem Güney, co-founder at Quantifiable Quality Care, is an organizational researcher specializing in collaborative practices and use of information and communication technologies.
She pointed out that stories are the way humans make sense of their experiences. Even in introducing themselves, attendees told little stories about how they came to be at the meeting. But stories, unlike surveys, or medical tests are not quantifiable at present. And frequently it is through stories, rather than surveys or other forms of data collection, that problems are revealed.
“My interest in all of this is figuring out a way to make what I think is really significant data that reflects that experience–the story of somebody with somebody else–to capture that in its integrity as you would tell it to someone else when you’re trying to make sense of it for yourself.”
A survey, she pointed out, might never ask the key question that unlocks a patient’s experience. And even just tagging and analyzing words from stories is a form of dissection. Once you start analyzing and quantifying the pieces of the story, Güney said, “You cut the frog and the frog is dead. The experience, as it was lived in the contextual integrity of someone’s story, is changed.”

Platforms to Collect Stories

She’s working on a platform to collect patients’ stories and then ask questions about the story such as “What does the story tell us about the nurse? That he/she was a) caring b) competent….” The responses to the questions can be quantified. But she wants to go farther in capturing experiences on a grand scale.
Güney is not alone in her pursuit of stories to effect change. Gregory Foster, project manager for the Consumers Union, talked about that organization’s platform: Stori.es, which collects stories for the purpose of affecting change. Stori.es provides a way to collect stories, sort them, tag them and filter them for use in policy or other kinds of change.
And CRG Medical has a tool called Share Our Stories, S.O.S. where people can report medical abuse and accidents.
At some point, as James Cooley of Health and Human Services pointed out, IBM’s Watson technology, which analyzes information from basic speech may be useful for mining large quantities of data from stories. But that’s not how it’s being used at present and, as Güney pointed out, it’s an enormously expensive technology. Not a practical tool for collecting stories across several populations.
Amber Lindholm, a design strategist at the Clinical Design and Innovation Center at Seton Medical Center pointed out that, in stories, it’s often one detail, one encounter that opens up the right path of inquiry or has the most impact. But participant Adam Ragsdale who works in business development IT Solutions at TRC Staffing Services Inc. was concerned that the emotional power of a compelling story could wind up trumping quantities of qualitative data that told a more accurate story.
The group plans to revisit the conversation in future meetings.
Nebular Health Tech is a new group started in April by Erin Gilmer, an attorney and health rights advocate.

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