Go to any cancer website, such as sites hosted by the National Cancer Institute or the Wisconsin Department of Health Services, and you will find important information about rates of new cancer diagnoses and five-year survival, for example. To population scientists, however, those statistics still leave a lot to be desired.
At the UW Carbone Cancer Center, our population scientists – those researchers who study communities and groups looking for cancer trends – look to our core facility, Cancer Prevention and Outcomes Data, or CPOD, to move beyond the basics.
“We have a long history of doing studies of cancer survivors and focusing on patient-reported outcomes,” explains Amy Trentham-Dietz, PhD, faculty director of CPOD who also was recently promoted to Associate Director of Population Sciences at UW Carbone. “We don’t collect much clinical trial data, or mortality or recurrence data; we often collect lifestyle factors and patient-reported outcomes, like quality of life, satisfaction with care, health literacy and barriers to care – all things that reflect the patient experience. These are things you usually can’t find in the medical record.”
Researchers at UW Carbone can work with CPOD to develop and implement studies that will accelerate improving patient outcomes. One recent example of a project on which CPOD consulted is the “extreme survivors” study led by UW Carbone oncologist and researcher Mark Burkard, MD, PhD. For that study, Burkard and his team need to screen over 2000 breast cancer survivors via an online questionnaire, in order to identify a subset of women with diverse genetic and lifestyle backgrounds who have survived several years with metastatic breast cancer.
“CPOD assisted with developing the questionnaire, programming the electronic survey, and recruiting women who have survived with metastatic breast cancer,” Trentham-Dietz says. “What’s great about that study is it really developed out of Mark’s interaction with survivors and advocates and things they were concerned about. So we were able to build in not only questions related to collecting tissue to do genomic studies but also factors related to diet and other exposures the women are concerned about – it’s important to be able to pull their concerns into the research.”
In addition to developing research questionnaires for population studies, another important way CPOD helps researchers is by pulling outcomes data from the Cancer Center’s cancer registry. This database contains electronic medical records from which trained users can pull cancer information. CPOD uses these data — with identifiers such as the patient’s name removed — to monitor patterns of how cancer patients are treated and how long they survive.
“The cancer registry has registrars that abstract data from the medical record, and supplement it by looking through things like text notes in the record. It’s data that aren’t yet easily extractable using computers, so humans are doing the abstracting in a very standardized way across the country, including here at the Cancer Center,” Trentham-Dietz says. “Where this process is really powerful is connecting the cancer registry data with patient-reported outcomes, where we can really get a comprehensive picture of factors related to cancer prevention, treatment and survival – and where to improve all those points.”
While she will continue to be the faculty leader of CPOD and lead her own research studies, Trentham-Dietz is also transitioning to her new UW Carbone associate director leadership role. She has already served eight years as a program leader in Cancer Prevention and Control.
“I’m excited to move to the next stage and to promote population sciences research and collaborations with basic and clinical scientists,” Trentham-Dietz says. “I think that’s where science can have its greatest impact – these multi-disciplinary collaborations.”
Read the full article at: https://www.uwhealth.org/news/improving-cancer-outcomes-by-focusing-on-the-patients/52174