With my work, I often interact with Physicians, Hospitals and Life Sciences companies. Seldom do my discussions center around brain cancer, but I often think about how whatever I am doing could be applied to cancer patients like Susie and the role I play as her care partner. The movement to patient centered care with increased access to health data is a very welcomed development.
I am encouraged this information is within reach of one’s smartphone. Now with OpenNotes, the information shared is getting richer and I’d like to think patients are more engaged. I am also hopeful with initiatives like Count Me In, that patient data along with genomics are being combined for research analysis in a more open fashion.
I do now wonder what kind of questions researchers are asking as they look at the data that has been collected, aggregated and shared by initiatives like the Brain Tumor Project. Sometimes, I wonder if joining a tertiary cancer hospital with a large research university could move the needle. I often wonder if researchers are looking at things that keep some of us up at night, like:
- I find it interesting gliomas shed tumor cells into the bloodstream, but they do not metastasize beyond the blood brain barrier. Is there something in the rest of the body that is inhospitable to gliomas or unique to microglia?
- Some patients experience severe adverse events, while others do not. We collect data to quantify the trial participant experience. Shouldn’t we collect data to better understand why? Imagine a test based on germ-line/ epigenetic sequencing or other measure that was able to better predict likelihood of severe events, or tumor response.
- For most brain cancer patients, especially those who experience decline in cognitive function, should there be studies similar to Dementia/ Alzheimers (AD)? It seems there are very few trials focused on improving memory function, quality of life… What about an AD drug (see MAG-8287) that could be used during treatment?
As I begin participating in an IEEE Working Group on Clinical Trial Decentralization, these are a few thoughts that sit in the forefront of my mind. The more I think about it, I wonder how much rare disease data is missing to answer such questions.