The Lung Microbiome and Why Your Voice Matters

Mention the word “microbiome” and my ears perk up. So you can imagine how excited I was to visit Dr. Leopoldo Segal’s laboratory at NYU Langone.

His team focuses on the lung microbiome, and much of their research involves identifying non-culturable microbes that live in the lungs and may influence whether or not we experience exacerbations.

Why I Joined the NYU Biobank

I am genuinely thrilled to participate in the biobank. Years ago, I signed off on them having access to my data and all bodily secretions. It was my way of contributing to science because I often do not qualify for clinical studies for bronchiectasis or MAC infections due to my low frequency of exacerbations.
​
Call me a little eccentric, but knowing that my data, sputum, and blood are now in their system and biobanks makes me feel proud.

Much more on this to come.

Why Patient Input Matters in Research

There are so many ways to get involved in research, whether by participating in a clinical trial or simply taking the time to complete surveys. I used to think those survey requests were a way for companies to sell my information to insurance companies. I was skeptical until I learned more.
​
Now I understand that the FDA requires patient input, which is why so many surveys exist. And when companies decide where to invest their research dollars, they rely on hearing from us to understand what the community truly needs.

Surveys Count as Research

So now, even when I am not feeling motivated, I still fill out the initial screening questions to see if I qualify for an interview or a detailed survey. That is also research.
​
And that counts.

An Upcoming Research Opportunity for Our Community

After Thanksgiving, I will post an opportunity for our community to participate in a new survey.

I hope you will keep all of this in mind and fill out the preliminary information. And the good news is that we will be paid for our time. I firmly believe that all stakeholders should be on equal footing. Scientists are compensated for their time and expertise, and we should be too.

If you choose to donate your honorarium to charity, that is entirely your decision. What matters most is that we have a seat at the table and that our time is valued.