All pediatric cancers and cancers of the nervous system, including brain tumors, are considered rare, according to Cancer Special Report 2017: Cancer Trends in Diagnosis, Stages, Treatment, and Survival Rates. Yet most of us don’t know there are 130 types of brain tumors, or that about 46,000 malignant brain tumors are diagnosed each year — until cancer strikes someone we love.

On St. Patrick’s Day 2016, my then four-year-old granddaughter Clara was diagnosed with a stage four glioblastoma multiforme tumor—terminal brain cancer. Her diagnosis set me on a search—either for a cure, or for treatments that might sustain her life until a cure was found.

As I watched my granddaughter withstand invasive brain surgery, aggressive radiation, and months of highly toxic chemotherapy, she exhibited an attitude that redefines the meaning of the word courage.

I also write children’s books with Clara’s older sister, my granddaughter Keira Ely. Together we wrote “SuperClara: a Young Girl’s Story of Cancer, Bravery and Courage,” a picture book dealing with brain cancer.

We wrote SuperClara to share courage and hope with children battling terminal illness. I also started the Bridge to a Cure Foundation, initially with the goal of funding research into treatments that could help sustain life for people suffering from cancer and other terminal illnesses until a cure is found

Sadly, Clara died on October 8, 2017. But our work at Bridge to a Cure goes on.

Recent breakthroughs in gene sequencing, immunotherapy and vaccine technology are creating tremendous opportunities. However, curing cancer continues to elude medical science. Why?

In my research I uncovered five deadly barriers to the timely development of pediatric cancer cures and treatments:

• Absence of a robust national database. Within regions, research centers, doctor’s offices, sequencing centers, and the offices of alternative medicine practitioners there is a wealth of data that — if collected and shared — would lead to quicker, more cost efficient and more successful treatments.
• The inability of even the most brilliant scientific mind to digest the millions of pages of research and medical files which could help physicians assess and treat patients. The advancements in artificial intelligence, if given the chance, could be a valuable resource toward addressing this issue.
• Inadequate collaboration within the scientific community. Like many corporate cultures, medical research is heavily influenced by reward systems, their funding source and past practices. These are all barriers to creating a collaborative environment that leverages its human resources. Many corporations in other industries recognized back in the 1980s that alignment and motivation around shared objectives would lead to greater collaboration and produce better results, and it did.
• Clinical trials are costly, slow and complex. While protecting the welfare of patients is the intent of clinical trials, for many, the process is more harmful than good.
• Opposition to alternative treatments. From a financial standpoint, it is understandable why medical research avoids serious consideration of alternative treatments — 60% of medical research funding comes from the pharmaceutical industry; zero funding comes from enterprises involved in alternative treatments. Oncologists dismiss it because it’s not supported by research. What might we learn if there was research?

The mission of Bridge to a Cure Foundation is to tear down these barriers and replace them with the building blocks necessary to finally find cures for cancer.

Recently we discussed how big data and artificial intelligence can break down barriers and speed work toward a cure. The key lies in using technology to its fullest extent, as we have in communications, commerce, media and all the other parts of our lives that have been revolutionized by digital transformation.

How can universal electronic data and digital technologies accelerate the search for cures for cancer and other terminal illness? Some efforts now underway provide an intriguing glimpse of the progress we can make if we tear down those five barriers.

Eric Lefkofsky, co-founder and chairman of Groupon, is also founder and CEO of Tempus, a Chicago-based technology company that is building the world’s largest library of molecular and clinical data, along with an operating system to make that data accessible and useful.

Founded by Lefkofsky and Brad Keywell, Tempus uses machine learning and genomic sequencing to help treat cancer. In September, the company raised $70 million from New Enterprise Associates and Revolution Growth, bringing its total amount of funding to $130 million to rank as one of Chicago’s Top 15 Tech Fundings of 2017.

“I’ve worked in technology for the better part of two decades. Yet a few years ago, when a loved one was diagnosed with cancer, I was shocked at how little data and technology had permeated her clinical care,” Lefkofsky said in a op-ed in US News titled Enlisting Big Data in the War Against Cancer. “Asking doctors to treat cancer patients without the benefit of modern software is like asking someone to drive at night with no headlights. It’s reckless.

Tempus’ system is designed to help “physicians in clinic analyze incredible amounts of data and make real-time decisions to more effectively treat patients,” Lefkofsy says.

Meanwhile, the National Cancer Institute Center for Cancer Genomics (CCG) is tracking the genomic signatures of cancers from thousands of patients, searching for commonalities and vulnerabilities to existing drugs or those in development.

There are four ways to target any disease, by attacking:

• The cause of the disease
• The disease itself
• Natural pathways the body has to fight against the disease
• The energy source for the disease

Under each of these categories there are subcategories. For instance, natural pathways include apoptosis, the death of cells that occurs as a normal and controlled part of an organism’s growth or development; and angiogenesis, the development of new blood vessels which control blood supply to the cancer and affect how the disease travels through the body.

CCG’s research is focused on working with the patient’s own immune cells, part of the body’s natural pathways. Wouldn’t it be great if we had one database containing everything we know about apoptosis, angiogenesis and all the other natural pathways?

Grail has raised more than $1 billion in funding to detect cancer through DNA shed in the bloodstream, while it’s still early enough to treat. Early detection is the key to better outcomes with cancer and any kind of terminal illness. Jeff Huber, a former Google executive, served as CEO at Grail in 2016. Huber was personally passionate about Grail’s mission to detect early-stage cancer with a blood test after losing his wife to the disease.

Also pioneering the use of digital technologies in the fight against cancer is Broad Institute, a joint venture of MIT and Harvard. Broad is bringing together researchers in medicine, biology, chemistry, computing, engineering and mathematics with collaborators around the world.  Among their initiatives are building an atlas of human cells and tumor cells.

Along with Tempus, CCG, and Grail, Broad Institute’s work should be part of a massive database to speed cures for cancer. Among the challenges of building such a database is how to report patient medical profiles, most of which are written documents that must be converted to digital formats. This is becoming a tremendous growth need and opportunity.

All these companies, along with major insurers, have incredible amounts of data. The challenge is how to combine all this information in a format that can be searched using artificial intelligence and computer algorithms. Our challenge is to get all the players organized to take this mission on.

Robert Martin writes books with his granddaughter Keira Ely, including “The Case of the Missing Crown Jewels,” and “SuperClara — a Young Girl’s Story of Cancer, Bravery and Courage.” Robert founded the nonprofit Bridge to a Cure Foundation.

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