PATIENT PERSPECTIVE
 

From pain to power

Forging the path for patient empowerment, one person at a time.

YVONNE ULRICH

 

Yvonne Ulrich is the Capability Development Leader for Strategic Regulatory Sourcing, and also the founder of ‘Patients are Us’, an internal network of breast cancer patients within Roche. A breast cancer survivor herself, Yvonne calls her journey of diagnosis, treatment, and transformation, her path to self-discovery. Today, she is a firm believer that patients should have a voice in their treatment decisions and is a passionate advocate for patient empowerment. In this interview with Dia:gram, Yvonne shares the lessons she has learnt since her diagnosis in 2014.

 

Yvonne Ulrich can still vividly recall the details of her trip to New York in 2009. “I was on a trip with a close friend, when she received a call from her twin sister. Her sister said, and I’ll never forget this, ‘I have breast cancer and I am going to die’. And my first thought was, but why does she immediately think that she will die?”

She soon discovered that her friend’s sister had been diagnosed with late-stage, triple negative breast cancer and the outlook was grim. “It was a jolt out of the blue and in some ways, looking back, is what led me on my own journey.”

Listen to your inner voice


It sparked an urgent curiosity in Yvonne, to learn more about her genealogy to determine if she was at risk of contracting cancer herself. Yvonne spoke to her mother to find out more about her family history. Being adopted, Yvonne’s mother did not know much about her past and never thought about looking into her genealogy. Not giving up, Yvonne found ways to dig into her family history and discovered that her grandmother and cousin had been diagnosed with breast cancer.



This increased the odds of genetic risk and so, Yvonne and her mother decided to meet genetic counselors to understand their risk. Doctors recommended bi-annual check-ups and assured her that she was in good health with little reason to worry.

Then, three years later in 2014, Yvonne felt a lump in her breast and was diagnosed with breast cancer. “My inner voice guided me to proactively undergo breast cancer screening. I knew in my gut that I survived because I began exploring and investigating early,” Yvonne says with determination.



Following her breast cancer diagnosis, she did the BRCA test to determine which treatments were necessary. Luckily the test came back negative. Yvonne says, “I have a genetic predisposition but we know too little to fully understand other genes for breast cancer that allow us to develop good approaches for cancer prevention.”

You can wait for the answer to come to you, or find it yourself


After doing a biopsy, Yvonne remembers very clearly hearing her doctor say ‘it does not look good’, and having to wait one week before she could confirm the diagnosis. That was the longest week of her life with no clarity and endless questions. Yvonne sought support from her family, friends and her teachers at a meditation centre.

“I saw this with my friend’s sister and even during my own diagnosis. When you first receive the diagnosis, your initial reaction is to just look to the doctor and say ‘tell me what to do’. But what we fail to realise is that the power of knowing, or feeling that something isn’t right, lies with us. We can do something ourselves to support our body and mind to get better,” says Yvonne.

One of her meditation teachers encouraged her to empower herself with knowledge. Not wanting to be left in the dark, Yvonne embarked on a personal mission to equip herself with information about cancer and how lifestyle can affect a prognosis.

“There is so much you don’t know that often times it’s difficult to tell what you should even be looking for. Yet, this much I knew - I only had myself to rely on.”

It turned out Yvonne was better prepared than she had expected. Her consultation with her doctor a week later revealed that she had early-stage breast cancer. While this was certainly upsetting news, Yvonne says she was not surprised. “I was so consumed with my quest for answers that I had analysed various possibilities and of course, having breast cancer was one of them. That’s why, for me, it wasn’t about looking at the obvious which was that I had this disease. It was more about what’s next and finding a solution.” Amid the sadness, Yvonne still had hope and tried to understand how she can help herself become healthy again.

Deciding to get a second opinion before she confirmed her treatment pathway, Yvonne carried hard copies of her pathology report, a DVD of her MRI scans, her X-ray scans, and drove for four hours to a hospital in a different part of Germany. Once there, the physician told her he could not view her scans because they were not in the right format.



There is so much more we can do to help patients go through this challenging time in life.

It was at this point that Yvonne saw a gap in the healthcare system. “Why didn’t they have a cloud system that stored patient data safely and conveniently so that doctors could share information?”

Every challenge is a chance for transformation


“The progress in technology seems light years ahead if we still haven’t been able to address the issue of connectivity within the healthcare system,” Yvonne says. She is not wrong in this regard. According to the PwC Health Research Institute (HRI)’s Global top health industry issues report1, people want a healthcare experience that mirrors the convenience and transparency of their experiences in banking, retail and other industries.

As healthcare systems around the globe experience growing consumer engagement, demand for improved access not only to services but also to data and information is rising. “Patients want to have a say in their treatment decisions and are often asked by the doctor which treatment path they finally want. You can’t have true empowerment without first giving people the power to choose whether they want access to this information or not,” Yvonne adds.

Using her experience for good


“It’s okay that I experienced these challenges in my journey. But it is not okay that every day, more patients are going through similar experiences with this one-hour consultation revealing a troubling diagnosis, and they are sent home empty handed. In 2018 we had 18 million new cancer diagnoses, 18 million people.”

“It is time for healthcare companies to not only think about healthcare from a clinician/laboratory perspective, but from a patient’s perspective as well,” says Yvonne. Patient empowerment no longer seems like a passing trend but rather a mainstay in the industry’s evolution. How healthcare companies capitalise on this opportunity remains to be seen.

Convinced that a patient portal is the future of improving the experience for patients worldwide, Yvonne is a strong advocate for making this a reality. She envisions a central database for both doctors and patients, that will not only record patient data and track the treatment and progression of the disease, but also provide vital research information for patients to cope with their diagnosis and become an active participant of their own healing journey.



The power of connections


Having a strong support network is essential for patients to cope with their disease. That is why Yvonne founded the ‘Patients Are Us’ network. “I didn’t start out wanting to be a patient advocate. But I felt that if I could help others by sharing my story, then I would. Recalling an instance that was an eye-opener for her, Yvonne says, “My children asked me if it is okay to speak about me having cancer. I encouraged them to share at school and their soccer club. The next day, they came back and told me about all the friends who had opened up to them about their mothers or relatives who have also been diagnosed with breast cancer but are thriving now. By sharing their stories, my children found a little circle of their own and learnt cancer is not always devastating.” As the founder of ‘Patients Are Us', Yvonne hopes to remove the stigma of cancer by encouraging colleagues to share their cancer journey. ‘Patients Are Us’ goes beyond a breast cancer support group. It is a group of 25 Roche colleagues who have overcome their disease and are fueled with passion to improve the patient experience for the cancer patients of tomorrow.

Yvonne hopes to bring the value of diagnostics to a new level, which is evident from her infectious zeal to improve patient care. She has experienced the need for a more holistic and digital approach to healthcare first-hand. “Patients have the power to play an active role in their healthcare journey, and there is an increasing desire to work together with their physicians to manage their disease,” she states. With people like Yvonne spearheading this evolution, the journey towards patient empowerment might not be that far away after all.

References:

1PwC Health Research Institute. 2018. Global top health industry issues: Defining the healthcare of the future.