Recently I received a new healthcare referral from a man who wasn’t feeling right. Something was different. The visit to the ER resulted in Glioblastoma— a progressive and terminal brain tumor. Living out the worst nightmare, this patient has to immediately adjust to the diagnosis while also trying to decide on best course of action. This includes decisions on next steps, best facilities for treatment, which doctors to choose. Medical records, scans and labs need to be collected. Family needs to be told. Insurance begins to play a role. Fear and insecurity become overwhelming. A waiting game ensues. Why?
A child begins vomiting 20 times per day with no illness. Six months later, she has not recovered. She has a gastronomy tube and a specialist who is handling the symptoms, but not a diagnosed disease. New pain occurs. Weakness. The doctors suspect Dysautonomia. The limited specialty clinics and specialists don’t make appointments until they make a complete review of all records and this takes 4 weeks. The first clinic won’t accept the child as a patient. A second clinic also denies an appointment. Why?
Each of these true experiences have a common theme – an unplanned and urgent healthcare issue that requires planned and researched decisions. However, this is rarely possible. Why?
With 30 years of hospital management experience, I now own a healthcare collaboration business and I make every effort to take the burden off families when a healthcare crises occurs. As the business has matured, so has the complexity of the patients; I am almost solely focused on cancer and rare diseases now. It is no easy task to learn the genetics of a cancer, the stage of a cancer, the type of cancer and try to match it with the top facilities and specialists, as well as the decision of which treatment and why, or when to join a clinical trial and how to find one. It is no easy task to find experts to diagnose a hidden or rare disease when the patient is suffering but answers are minimal. Opinions often vary. Our most trusted source of research is Google. Why?
In my pursuit of narrowing down the field in order to apply it to the patients I serve, I learned about Joe Biden’s Cancer Moonshot initiative, with specific interest on data sharing collaboration. The Children’s Brain Tumor Tissue Consortium was founded by two doctors who are passionate about encouraging researchers and healthcare facilities to share their data openly with the world. One would think this already exists. Until now it didn’t! The Consortium is now affiliated with 15 of the highest ranked facilities worldwide so that they all have access to the analysis of data to include tissue from cancers and rare diseases and they are studying together an open source, cloud-based data platform; Cavatica. This data can then be used to provide the right treatment, the first time, for patients.
We finally have the potential to remove the guessing game from our treatments, which also eliminates risks, and use of drugs that don’t work.
I developed “Collaborate for Cures” in an effort to begin a grass roots movement to educate the public about the Consortium and the advances being made for cancer and rare diseases. The overall mission is for patients and consumers to become better educated and engaged in their own healthcare and encourage the international medical community to collaborate together, for cures.