When Judy Schwartz Haly was first diagnosed with breast cancer five years ago, she promptly went into information overload, not just with regard to cancer, but resources.
“Everything came at me all at once and everyone had a suggestion but none of them at the moment I needed it,” said the 44-year-old from Seattle. “My purse filled up with napkins with hastily scribbled resource names that later I couldn’t decipher. I actually wished for a database … so I could find what I needed at the time I needed it.”
Now that database exists, thanks to the Solid Tumor Translational Research, or STTR, group at Fred Hutchinson Cancer Research Center. Launched late last month, the new Web portal offers a host of patient resources in one easy-to-use – and searchable – database.
“Patients shouldn’t have to do Google search upon Google search upon Google search to find the resources they need,” said Desert Horse-Grant, director of strategic planning and operations for STTR. “[We’re] trying to get rid of the silos that can happen and make information available. Our whole point is to speed up the process of getting meaningful information to patients.”
The database currently has more than 1,100 no- or low-cost resources in a range of categories: clinical trials, cosmetic, education, financial, home-care, recreation, scholarship, social support, transportation and more. Patients or their loved ones can search by location, by resource type or by cancer (bladder, brain, breast, colorectal, kidney, lung, lymphoma, pancreatic, pediatric and more) or they can simply enter search terms like “rent,” “summer activities,” “groceries” or “gas cards” to find what they need.
While the database primarily serves patients in the WWAMI region (Washington, Wyoming, Alaska, Montana and Idaho), resources in Oregon are included along with many national services such as Ronald McDonald House and the Corporate Angel Network, which offers free travel on corporate jets for treatment-bound cancer patients.
The services are wide ranging, with everything from free breast prostheses and mastectomy bras to college scholarships for people affected by cancer to lawn mowing services, fly-fishing retreats and yoga. Patients can find wigs, lodging during treatment, housekeeping help, legal assistance, art therapy, support groups and much more.
“We couldn’t believe the services we were finding,” Horse-Grant said. “We didn’t know there were camps for kids whose parents have cancer or babysitting services for people who have chemo appointments. We found amazing organizations doing great work.”
Lisa McFerrin, a bioinformatics specialist at STTR, built the “back end” of the database, and summer interns Evan Carl, Mikah Williams and Satchel Grant worked with social workers at Seattle Cancer Care Alliance to learn what kinds of things patients needed. The team then scoured the Internet for services and populated the site with information and links.
“It’s encouraging to see how many resources are offered for no cost or low cost to cancer patients,” said Jennifer Vehrs, a program coordinator who helped with the project. “I wish I’d had access to something like this when my family members were going through their treatments.”
McFerrin said finding no- and low-cost resources was a huge priority.
“There are a lot of places around that offer expensive services, but we wanted to provide things that anyone could have access to,” she said. “Cancer treatment is always so costly, and then trying to do things on top of that … it can be debilitating. We found a lot of resources that can help people but aren’t going to take a bite out of their wallet.”
According to McFerrin, the database includes 159 different financial resources. Mission4Maureen, for instance, helps brain cancer patients pay their bills. CancerCare offers co-pay assistance for chemotherapy and medications.
The home-care category has just 13 resources, but they are key services.
“It includes materials for loan, like wheelchairs, walkers and hospital beds as well as services such as pet care, house and yard work, errands and meal preparation services,” McFerrin said.
The listed services have not been vetted – the information is provided only as a convenience – and patients and patient advocates are welcome to email additional resources to the STTR team (firstname.lastname@example.org) so they can be folded into the database. There is no cost to organizations to be added to the database.
“It’s totally about collaboration,” said Horse-Grant. “A lot of other people have databases and websites that list resources and we’re happy to link to them, as well.”
STTR – which brings together researchers and clinicians from Fred Hutch, UW Medicine, Seattle Children’s and Seattle Cancer Care Alliance – is all about connections and collaborations. Its mission is to bridge laboratory sciences and patient care to provide the most precise treatment options for patients with solid-tumor cancers such as bladder, brain, breast, colorectal, head and neck, lung, ovarian, pancreatic, prostate and sarcoma. Toward that end, STTR offers an array of biotools, including the STTRConnect Faculty Collaboration Database and HIDRA, a comprehensive database of patient clinical records, tumor data and related research.
The STTR Patient Resources Database, which connects patients with services to make their life during and after treatment easier, is yet another manifestation of this mission.
Elizabeth MacKenzie, a 49-year-old Seattle psychologist who was diagnosed with breast cancer three years ago, said she definitely could have used a resource like this after learning about her cancer.
“I did try to use Internet searches to find resources but had to look in many places and none of the sources were integrated like this,” she said. “This database is very easy to use and well organized. I will recommend it widely.”
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she also writes the breast cancer blog doublewhammied.com. Reach her at email@example.com.