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The Fragmentation Monster Under My Bed: A Researcher's Worst Nightmare

One of the biggest challenges we face in the field of young adult cancer is a lack of evidence. As a researcher in the young adult cancer arena, this makes me feel like I'm chasing my tail. So today I am grateful for National Young Adult Cancer Awareness Week.
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In honor of National Young Adult Cancer Awareness Week, I've invited the Director of Community Initiatives for Critical Mass, Dr. Rebecca Block, to guest blog today. In my last blog here, I touched on the issue of fragmentation. Today, Dr. Block addresses further how this issue has become one of the biggest obstacles we face when it comes to improving care for young adult survivors, but she also explains our vision of the future. And it's a good one! - Heidi

Young adult cancer survivors and the people who love them aren't the only ones who benefit from coming together. Building community isn't just about building support. It's also about combining resources and data. Just like with people, the more we aggregate, the more powerful the results. You know: "Wonder Twin powers, activate! Form of... an eagle! Shape of... a water bucket!" Or something like that, anyway.

One of the biggest challenges we face in the field of young adult cancer is a lack of evidence. As a researcher in the young adult cancer arena, this makes me feel like I'm chasing my tail. We can't get research dollars because we don't have data and we don't have data because we don't have the prioritization or funding to do the research.

The most obvious problem with building an evidence base for young adult cancer is the challenge of gathering a significant number of young adult patients to study. These patients are spread out all across the country in a way that is different from pediatrics or adults. Too many moving parts in too many different places with too many players, all using totally different playbooks.

Here's the lowdown -- most children under 15 are treated for cancer in dedicated facilities that are all connected for research purposes, and yet they constitute less than 1 percent of diagnoses a year. But because information is shared, the small numbers are a boon rather than the bane of the researchers' existence. And, there is a strong research base for middle-aged and older adults because of sheer numbers, with over 90 percent of cancer cases per year in people 40 years and older. But neither of these situations is the case with young adult cancer.

When it comes to young adults, there are 70,000 new diagnoses a year (that's 6 percent of all diagnoses), and patients are most often treated in community settings by adult oncologists, who may each only treat one or two young adults a year. On the other hand, the group of young adults who do end up at academic centers still gets (rather arbitrarily) divided up between pediatrics and adults, and, even further, across a variety of disease specialties.

Add to that the fact that young adults are generally outliers on clinical trial age ranges -- both pediatric and adult -- and that research infrastructure and commitment to research can range from full engagement to no connection at all and, well, you can see the quandary we face. Voila, the fragmentation monster under my bed is revealed.

This creates a nearly impossible research situation because it's simply not possible
to answer any real research questions without a statistically significant population.

In the current best-case scenario, a cancer center sees 1,000 young adults and uses the data from their care for research purposes. But with individual institutions collecting data on their own smallish young adult population in their own way, even if we compare between institutions it's difficult to know if we're seeing the same thing because we simply can't compare apples to oranges.

Working alone, researchers might be able to change the way care is delivered in their hospital. But working together, hospitals, cancer centers and community oncologists could change the way we care for an entire population.

There is a huge gap in information because we have lots of puzzle pieces and no way to fit them all together. What we need to do is aggregate the numbers. We need every site that sees young adults to collect the same data using the same instruments so we can put all of the puzzle pieces together and get a complete picture of the population.

That's why Critical Mass is advancing a National Young Adult Cancer Registry, so that we will have all the same information in the same place using the same instruments. Then we need the best researchers in the country to look at this data so we can reach our ultimate goal -- the best possible care for young adult cancer survivors.

Nothing about this conversation negates or undermines the incredible research and data sharing that is currently going on. But we need everyone in the field of young adult cancer working together to set the tone for how research needs to be done in this field -- collaboratively, not competitively.

So what are this researcher's daydreams filled with? Data sharing, collaboration, and aggregation. I'll confess that, some days, you will literally find me gazing out the window, dreaming of the day when everyone in the field is working to that end. (Hey, don't judge! Researchers can dream, too, you know.)

So today I am grateful for National Young Adult Cancer Awareness Week. It reminds me of the incredible research that is happening, the remarkable collaboration that is underway, and that we are so very close to sweeping that fragmentation monster right out of the house, and locking the door on it for good. --Dr. Rebecca Block