Thankful to be in remission today, patient advocate Cecilia Olsson now spends as much time as possible speaking internally and externally on breast cancer patient experience topics, including the importance of exam personalization and reaching more women with information essential to their diagnosis and recovery.

Cecilia never fathomed being diagnosed with breast cancer herself. Married with two teenage daughters and a fast-paced career at GE Healthcare made it seem as if all her stars were aligned. She did not have any traditional risk factors and working for a large multinational corporation provided an added sense of protection. Commuting from the early morning hours on a high speed train did not leave much downtime to think about the possibility yet it was still on her mind.

"I did see physical changes in my breast but at first I didn't believe it could be happening to me," said Cecilia. "When I finally decided to do a self-exam in January 2015 I could feel something between my fingers."

Cecilia scheduled an appointment with her doctor immediately and after a mammogram and ultrasound was diagnosed with an aggressive form of breast cancer within a couple days of her self-exam.

"At the moment I was diagnosed I thought about my life ending and spent days ruminating about not seeing my daughters grow up," explained Cecilia. "My positive attitude took over and I began reminding myself how lucky I was that this was not happening to my kids, my husband, or someone else I love."

Unique set of advantages

After doing internet research about her disease, Cecilia learned that recovery would come from medical treatment, but that was also dependent on her being proactive about self-care and well-being. Fortunately she had a healthy lifestyle that included regular exercise and proper nutrition already. Additionally, Cecilia recognized that by being employed by the company that develops advanced technology that makes it possible to detect breast cancer, this was providing her with unique access to information and insight that few others have.

"I felt very lucky," Cecilia says, "for me the silver lining was I knew I could fight this with the combination of resources and advantages I realized were on my side."

Treatment began immediately, but it was a long journey with multiple treatments: heavy surgeries, radiotherapy, cell therapy and continued hormonal treatment. After a year of breast cancer treatment, Cecilia spent another year undergoing reconstruction surgeries.

Two years of treatment and reconstruction included a substantial amount of time in waiting rooms with other women on similar journeys. During this time Cecilia noticed many women would gravitate toward her positive attitude seeking inspiration and even advice.

"Talking to other women with breast cancer was also an inspiration to me and I began wondering if the unique set of personal and professional resources I was relying on to help me might also help other women," said Cecilia.

Internal patient advocacy inspired by patient experience

Once Cecilia connected all the dots regarding her roles as both a breast cancer patient and GE Healthcare employee, she became interested in finding out if there was a way to do much more in her role with the company from the inside to change conventional thinking about the patient journey and how to improve it. She started to speak up when appropriate opportunities arose and quickly realized the advantages of having an internal patient advocate.

"Now I speak internally and publicly at conferences about mammography-oriented topics and ways to improve the patient journey," commented Cecilia. "It is so empowering to feel like I have a hand in influencing the patient experience from within my own company because it means I can help many more women than just myself."

If the engineering team is developing new mammography techniques they can call Cecilia for patient insight. When GE Healthcare sells a complete imaging system the entire concept of the patient experience from waiting room to test results can potentially be reconsidered to support better patient outcomes.

Finding gaps in the patient journey

One area of the patient experience that stuck out for Cecilia was the significant gaps in awareness and knowledge among the women she spoke to in waiting rooms. Topics ranged from lack of information about routine screening and how to manage or prevent side effects to the importance of aerobic exercise and proper nutrition for healing. Barriers to being well-informed include socioeconomic factors and lack of access to the internet or how to use it.

"This is my main goal today," explained Cecilia. "I want to fill those information gaps together with my company and make sure every woman knows about the importance of self-exams and screenings and what to expect, and how big a factor well-being and exercise play in recovery."

At the annual Radiology Society of North America (RSNA) conference, Cecilia will welcome clients for a discussion about the importance of optimizing the patient journey and how the ideal waiting room experience can have significant impact. Benefits for client partners and their patients are demonstrated to show how time spent by women waiting to be called for their appointment is an ideal opportunity for patient education that supports total patient care and outcomes.

"I feel physician waiting rooms are where we can reach and increase awareness to arm all women wherever they are on their breast cancer journey regardless of challenges like lack of internet skills or social background," Cecilia explained. "All women need the same level of information."

Breast cancer detection personalization

Having experienced the full patient medical journey, Cecilia has undergone numerous imaging exams conducted for a range of purposes, including screening, diagnostic, and follow-up, among others. She noticed how each of these scenarios requires different instructions and information that could be personalized by the mammogram technician to provide optimal exam experiences and outcomes.

For example, the mindset of a woman coming for an annual screening and schedules her appointment in between errands or during a work day break is in a more relaxed mindset. In comparison, a woman who is coming to the breast cancer exam for follow-up confirmation and diagnosis has far more serious expectations that may even warrant having a member of the medical team following this patient more closely.

"And then there is the patient who like me now is coming in post-surgery and does not know if their scars can withstand the compression and their mind is filled with what-ifs" said Cecilia.

"This is how I hope to influence our internal training programs," explained Cecilia. "By explaining how different patients at different stages in their medical journey need to hear the information that makes the most sense for their particular exam purpose."

Cecilia looks forward to educating and informing industry colleagues about how the various information gaps in the breast cancer patient experience can be decreased or even eliminated to improve care for all women.

"Of course I want to continue to be a role model for my daughters because I feel they have fear about their own future now that their mother has had breast cancer," said Cecilia. "I want them to have trust in the treatment and the technology as well as in how they are treated during their health journey."

Reference:

Interview with Cecilia Olsson, Business Operations Leader, On Demand Services, GE Healthcare, conducted 9/23/2019