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.