Connie Montgomery: Bridging the Gap Between Patients, Culture and Clinical Trials
Connie Montgomery, National Board Member of Trustees at Camden Coalition, shared Ashish R.’s post on LinkedIn:
”Come join us today and tune in for our 9 am EST conversation with Ashish R. about authentic patient engagement, culture, western medicine and participation or the lack thereof in research and clinical trials.
You will be glad you did!”
Ashish R., CEO and Founder at Unwritten Health, shared a post on LinkedIn:
” ‘My lung function hasn’t changed. But day to day, I’m living a much better life, and that isn’t captured in the data.’
That’s Ella Balasa on Now Written: Live. Over years of treatment, she gained three percentage points of lung function on a 0–100 scale.
Statistically, it’s neglible. In the chart, it’s a straight line.
And yet her life got noticeably better in ways the study never even tried to count.
That’s the gap, right there.
When the only proof that matters is what instruments can log, the outcomes people actually feel, the ones they wake up to every morning, fade out of the story.
Not because they didn’t happen. Because no one decided they were worth measuring.
If the dataset says ‘no change,’ while the person says ‘everything changed,’ the issue isn’t the person. The issue is the dataset.
Ella can spell it out, she advocates, she has the words.
Most people don’t get that option. They don’t get to say, ‘you tracked the wrong thing.’ They just end up filed under ‘unchanged.’ So I want both sides here.
If you’ve been a patient in research, what got better that no test ever reflected?
And if you design or run trials, what would it take to get that kind of change to count as real evidence?”
Proceed to the video attached to the post.
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