[author: Carolyn Treviño Jenkins]
Through her experience with breast cancer, Project W Alumna Carolyn Treviño Jenkins learned first hand the challenges of getting the resources needed to help her navigate the treatment and recovery process. And Carolyn was among the lucky ones. She had the financial resources and support system to manage her journey. As a survivor, Carolyn vowed that she would find a way to help other cancer patients access the resources they needed quickly and efficiently. Carolyn shares how the company she co-founded, We Are Here, improves the patient experience and promotes health equity.
We Are Here is an AI driven platform, co-founded by cancer survivors and caregivers, on a mission to enhance cancer care. We have a large quintuple aim.
We Are Here's Humble Beginnings
In 2018, I was excited to be hired as the CEO of a company with a SaaS strategy execution solution. Sixty days later, I was diagnosed with breast cancer. I was handed a thick, generic notebook by a leading cancer center in Central Texas. My notebook had pages of URLs for cancer non-profits to "help me" find the resources I needed. I instantly observed that technology could improve the notebook experience. My life was busy before cancer – executive, mom of three active kids, wife, and community volunteer. Carving out time for doctor appointments, medical tests, and procedures was an additional strain on my time. As a result, I did not explore many of the links and missed out on some amazing resources and community support.
Identifying the Need for Technical Solutions
I kept noticing the opportunity for technology to ease the journey as I progressed through decisions and research. The resources I most needed weren't even in the notebook. My reconstruction team was a different practice. They gave me a folder with material that had a few useful product suggestions for post-surgical bras, but was far from containing everything I needed. The real clincher for me came a few days before my bilateral mastectomy. A nurse explained that I would need to put my four, post-surgical drains on safety pins, drape the pins on a wire coat hanger, and have my husband place the hanger on the shower head for me. That simple explanation assumed so much - that I had a husband, that I was okay waiting for help to shower for weeks until the drains came out, and most of all, that I would be immediately comfortable revealing my raw scars and drains with others. It took me two hours of searching to find a $12 shower belt that gave me independence and dignity. I knew then that I would one day work to make the journey easier for others.
The Financial Strain of Cancer
Cancer is expensive. I was on a high deductible health plan. I was in a position to write a $3,000 check to start treatment and to purchase items to make recovery easier, but the out-of-pocket expense of cancer was not lost on me. Cancer patients spend 42% of their annual income on out-of-pocket expenses. 74% of adults with cancer skip or delay care because they can't afford it. People make choices between paying rent and getting chemo. That is definitely a problem I want to help address. There is a lot of help out there. As a matter of fact, there are over 5,400 cancer non-profits and a search for "cancer" on Amazon returns over 100,000 results, but that is actually part of the challenge. Who has time to sift through all of that? Not you and not the clinicians who try to help you navigate the journey.
The Birth of We Are Here
By 2020, I was cancer free and reconstruction was complete. Treatment left me with mild lymphedema in my left arm and I was pushed into menopause; so, like most cancer survivors, my journey did not end, it evolved. I was committed to making the journey easier for others, but I knew the problem was too large to tackle alone. Fortunately, God guided me to meet amazing cancer survivors, cancer caregivers, and health change makers who also wanted to tackle gaps in cancer care. Together, we created We Are Here.
The first order of business was interviewing patients, survivors, cancer caregivers, and non-profit leaders in cancer navigation. Themes definitely emerged. People were overwhelmed, struggling financially and drained emotionally – and plenty of research shows that each of these conditions leads to worse outcomes. So logically, we explored the cause. On the surface, cancer is the cause, but we went deeper.
We found these conditions exacerbated by three large gaps in care:
- The time between diagnosis and access to clinical navigators.
Wait times vary. In some towns, the typical time between diagnosis and first oncology appointment (and access to the clinical care team) is 3 weeks, in other locations the wait can be months. Socio-economic, demographic, and geographic factors impact wait times. Wait time doesn't only delay care, it increases stress – and 85% of patients and 70% of oncologists believe stress impacts outcomes.
- The lack of a centralized platform for access to all of the resources needed, especially for everyday life challenges.Standard operating procedures are still notebooks and excel spreadsheets being created and updated separately. Those sheets focus on medical care and rarely have suggestions for the toll cancer takes on everyday life. It's understandable, because everyday life challenges are so unique to each individual. They range from worrying about hair loss, to needing help with gas, childcare and making appointments, to concerns about who will help the kids with homework or walk the dog. Once again, stress rises and the financial impact of missing work while also spending extra money on products and services becomes untenable.
- The loss of access to the clinical team when active treatment is over.
You may become a "survivor", but life is not back to normal – finances, relationships, anxiety, comorbidity – everything has changed. The journey does not end -- It evolves. At We Are Here, we describe healing as an upward spiral. Once again, there is help and support out there, but the need to start over and find all new communities places barriers between needs and help.
How We Are Here is Addressing These Gaps
Our platform is available on day one of diagnosis. 77% of users opt to complete the self-guided onboarding that is available 24x7. Our platform not only centralizes resources for everyday life challenges caused by cancer, our AI engine shares the specific resources with users based on their unique needs and challenges. On average, our platform saves users 70 hours of time, connects them to $1500 in grants and discounts, and 50% of users report their overwhelm is lower after their first interaction. We help users get money to pay rent and hotel bills, keep the electricity on, get free and discounted housekeeping during daily radiation, and so much more. We have a 100% satisfaction rating for 7 consecutive quarters. The clinicians and non-profits who work with us are relieved to be able to offer patients, caregivers and survivors a more comprehensive, centralized hub for help.
Transforming Cancer Care
Back to that quintuple aim. Today, we improve the patient experience, we boost clinician well-being, and we enhance health equity. National evidence indicates we also reduce cost of care and improve outcomes. While we continue to grow the business, We Are Here right now for anyone impacted by cancer. On a personal level, I tested positive for a gene associated with ovarian and breast cancer. I hope my daughters don't join the cancer club, but if they do, I want their journey to have the benefits provided by We Are Here.
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