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How Cancer Survivors Are Teaching Researchers Long After Treatment

Fred Hutchinson Cancer Research Center
This article is deemed a must-read by one or more of our expert collaborators.
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cancer research
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Giving Compass’ Take:

• Rachel Tompa explains how researchers use data collected from cancer survivors long after their treatment to alter treatment and follow-up tactics. 

• How can funders work to increase longterm feedback from recipients of medical treatments? 

• Learn how to create a meaningful feedback loop. 


As former director of Fred Hutchinson Cancer Research Center’s Long-term Follow-up Program, or LTFU for short, Dr. Paul Martin oversaw the team that tracks and follows every patient who’s received a bone marrow transplant through the Hutch. Some of the survivors — who number in the thousands — are 40 or more years out from their transplant at this point.

Every year since its inception in the early 1980s, the program sends out a detailed questionnaire to every transplant survivor. The answers to these questions inform a host of research topics on the long-term effects of transplantation, from graft-vs.-host disease to cataracts, from secondary cancers to infertility and sexual dysfunction.

When Martin became the program’s director in 1999, he added a question to the end of the questionnaire, asking simply whether there was anything else the survivors thought the physician-scientists and other clinicians should know about their experience.

There was a lot, it turned out. So much that Martin needed to take several days over the winter holidays to read through each year’s worth of comments.

It’s a ton of work. It’s very emotional. I just remember being completely drained after reading them all.

Comments sent in on the questionnaires have spurred several changes at the Hutch, from sorting out billing issues the clinicians didn’t realize their patients were experiencing to spurring new research projects on survivorship issues such as sexual after-effects and post-traumatic stress disorder.

But perhaps equally importantly, the comments also have influenced how Martin and his colleagues view the very nature of their jobs — caring for and looking for more insight into this special class of cancer survivors. Some Hutch transplant physicians will even suggest that their patients who are facing transplants should read some of the collections (representative comments are published anonymously on the program website) to get a sense of what to expect.

Read more about how cancer survivors teach researchers by Rachel Tompa at Fred Hutchinson Cancer Research Center.

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Since you are interested in Health, have you read these selections from Giving Compass related to impact giving and Health?

  • This article is deemed a must-read by one or more of our expert collaborators.
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    New Report Explores the Environmental Impact of Food Packaging

    Giving Compass' Take: • A new report says that we as consumers pursue healthy and sustainable eating habits, but still overlook the impact of food packaging on the environment. • How can we be more cognizant of food preservation and support organizations looking for ways to reduce waste?  • Here’s why making food waste profitable will engage companies to be proactive.  The report challenges eaters who have sustainability on their minds to think beyond just the food they consume each day. “If concern about climate change, the environment, or your personal health are motivating factors for you when it comes to deciding what you eat, it’s important to realize that those same issues are factors when it comes to food packaging,” FoodPrint’s Director Jerusha Klemperer tells Food Tank. “There are massive environmental issues with the way our packaging is made and with how much we use and throw away—and there are some very problematic and dangerous materials present in food packaging as well.” The prevalence of plastic use, according to the report, has everything to do with eaters’ love of convenience. “A lot of packaging, especially single-use food and beverage packaging, is extremely convenient. And saying no to it, or finding alternatives, can entail swimming upstream, like saying “no, thank you” a lot, or bringing your own supplies and packaging,” says Klemperer. Plastic is cheap and heavy-duty, and because of its durability—it never really disappears. Some of it is recycled or incinerated, but the majority of it ends up in landfills or as litter in the natural world. This litter accumulates into masses like the Great Pacific Garbage Patch (GPGP), an area in the Pacific Ocean, located between California and Hawai’i that is estimated to contain at least 70,000 tons of plastic. And, according to Klemperer, the chemicals that leak from plastic—bisphenols, phthalates, and polyfluoroalkyls or PFAs—can interfere with human health and hormones. Read the full article about the environmental impact of food packaging by Iris Leung at Food Tank.


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