From gigantic chemo bag to mobile app – Debbie Berg’s care changing work
Debbie Berg, an IT Project Manager, had been working at Seattle Cancer Care Alliance for just four months when her world was turned upside-down with a diagnosis of multiple myeloma. Debbie started at SCCA as a contractor in April of 2010 and decided to go in for a routine physical in July after being officially hired as a full-time employee.
That routine physical likely saved her life. Debbie was diagnosed early – her cancer was on the border of Stage 1 and Stage 2. She’d been feeling exhausted, but as a busy working mom, didn’t give it much thought. Debbie started a four month chemotherapy regimen right away, and had an autologous stem cell transplant in January of 2011. At her 80 day post-transplant checkup in April, Debbie heard the good news that she was in remission. She went on maintenance chemotherapy for a year, and goes in twice every year for blood work and scans.
Debbie’s experience as an employee and SCCA transplant patient proved invaluable as the IT team started exploring ways to improve the experience for SCCA patients.
Using technology to extend care for SCCA patients
Right after her diagnosis, SCCA’s Chief Information Officer, Dave Ackerson, pulled Debbie aside to ask what he could do to help. Initially, she asked to be able to work from home after her chemo treatments, and Dave was happy to support her. But as she went through treatments, prepared and then received her transplant, Debbie started wondering how technology could ease stress for others going through cancer treatment.
Like many other cancer patients, Debbie needed easy access to her lab results, manuals, medications, journal, list of symptoms, questions for her doctors, survivorship documentation and more. To make sure she had all the information she needed for her care, Debbie hauled everything in her heavy “chemo bag” from appointment to appointment. She never knew from day to day whether she’d need platelets, a transfusion, or a blood draw, and she needed to always be prepared to be admitted to the hospital.
Carrying her giant chemo bag everywhere was frustrating, but without the bag, Debbie had no good way to document procedures, share questions with her care team and track symptoms. The bag was the way she managed daily life as a cancer patient.
During her treatment, Dave asked Debbie how she was doing and she responded by showing him the bag. It was stuffed with five different manuals (on everything from caregiving to preparing for transplant), her cancer journals, lab results, procedure documents and all the various business cards for all her different care teams.
Dave had already been thinking about how technology could improve the experience for patients, so he read Debbie’s logs and learned more about the unique challenges she dealt with on a daily basis. Soon afterwards, he sat down with Chief Technology Officer Brandon Jones to discuss solutions for patients like Debbie.
Designing and building a mobile solution
Dave and Brandon started by interviewing patients and staff to understand the most pressing problems. They wanted to put the patient at the center of their thinking in building a platform that improves patient satisfaction and enhances the quality of life for people with cancer. One of their goals was creating something that would replace Debbie’s chemo bag.
“When we talked to patients and caregivers, we learned that cancer is confusing, and all the information is overwhelming,” said Brandon. “Our patients said they want help remembering what their doctors said; they need to be able to access information 24-7 and they want to be empowered to manage their care. They want a search capability so they can look up what to do if they have a fever and when they should call their care team.”
Dave and Brandon also recognized that they’d need development help to build a solution that would support cancer patients and improve their care experience. Cancer patients often seek an easy and convenient way to access their health information any time of day.
This is exactly why the newly formed Digital Health team at SCCA created the SCCA patient app, Caresi.
“Patients choose ease of use over trust,” said Brandon. “They use WebMD over government sites. Our patients trust us, but we didn’t have an easy-to-use app before Caresi.”
SCCA partnered with L4 Digital to build prototypes that they reviewed with patients, and they kicked off a Caresi pilot with 60 breast cancer patients last February. The team focused on combining the utility of the app and the humanity of the interface to create moments of delight for patients.
“We wanted to learn how patients want to interact with something like this on a daily basis,” said Dave. “Part of our role at SCCA is to improve the quality of life and decrease the burden of cancer for our patients while they’re undergoing treatment. Caresi empowers patients to manage their own care and track side effects.
Next steps for Caresi
After gathering data to improve the app for seven months, Caresi was released in the Apple App Store in October 2016. The app is now available for SCCA breast cancer and acute myeloid leukemia patients with iOS devices (iPhones, iPods and iPads) and SCCA patients at Northwest Hospital. Support for more disease types is in development and will be released soon. Since last October, users have entered 1,100 symptom trackers, taken 251 notes and viewed the “patient schedule” more than 9,000 times.
Patients have told us they depend on Caresi for all of their appointments and care, that they love being able to record their conversations with their doctors and that they appreciate not having to carry around stacks of paper.
Dave and Brandon have committed to keep building and improving Caresi, and they remain laser-focused on improving population health, enhancing the patient experience and seeing if the app’s trackers can help avoid complications.
Debbie’s still hard at work as Caresi’s biggest fan, and as the implementation manager she’s helping lead its rollout. She celebrated her sixth “birthday” of being cancer-free on January 20, 2017, and the entire Digital Health team joined her for the party. Her focus has shifted from appointments and procedures to spreading the word about Caresi to patients and SCCA employees, and helping make the app available to everyone who needs it.