A Wish for 2025
Hoping for progress on many fronts in the coming years
As you probably know, long-term (5+ years) cancer outcomes studies are limited primarily to using SEER data and a few other registries1. We have yet to unlock all the data in the many proprietary EMRs and to link the patient treatments and outcomes across multiple healthcare delivery sites, a promise President Obama and many others made to the American people over 15 years ago when we spent billions of our public dollars to make electronic medical records affordable for all health care practitioners. Therefore, not only should patients own their data, but the government has a tremendous financial and moral claim to own the data in the public trust.
How do we improve this situation so that researchers have unfettered access to the vast trove of data that would allow analysis of rare diseases like neuroendocrine tumors and many other conditions that are not rare at all? Without the data, you cannot engage in healthcare quality improvement actions nationwide for all patients.
We cannot improve healthcare when patient data is ‘owned’ by anyone but the patients and we, the people, who PAID FOR IT!
HHS and its agencies - PHS, CDC, FDA, NCI, & CMS have not cooperated to create a data lake of anonymized oncology patients in the US since I first met with them over 15 years ago about this issue and delivered an address to the National Cancer Policy Forum of the National Academy of Medicine. Companies like Epic Systems, Cerner, and Flatiron (including hospitals, other healthcare providers, and payers like United Healthcare and Kaiser) ‘own’ the patient data that millions of patients suffering from grievous illness use for healthcare services have archived in their software systems, selling it to IQVIA and other ‘data brokers’ creating a kettle of vultures who make even more profit off the suffering of families and leaving us with limited to no information.
I do not know how to change this terrible situation, and now I have learned firsthand how the paucity of information about treatments and outcomes for NET tumors leaves clinical physicians, patients, and families making medical decisions with little or no information about the efficacy of many treatments. Like people stumbling around a dark room, tripping and falling over each we are suffering and in distress and anger from the lack of coordination of healthcare much less than from the lack of information as these for-profit and not-for-profit entities have slowed data coming to researchers and others to a tickle from the ocean of data being collected on healthcare and the digital information flowing through the internet in the US (again, funded by the US Government). This is intolerable and awful and must stop.
Patient data does not belong to anyone, as even most of the money that goes towards its collection is from the government, both state and federal; thus, it belongs to all of us trying to improve treatments, coordination of healthcare, and quality of life for patients and their families that are daily suffering from terrible illnesses and their treatments, that are part of the human condition, but also a consequence of the ‘system’ that we have cobbled together.
As Alexander Pope wrote, Say first, of God above, or man below; what can we reason, but from what we know? For hope springs eternal in the human breast. (An Essay on Man, 1733)
On this new day of the new year, my friends, coworkers, colleagues, and students who have labored in the trenches of patient care and medical research over the many years with me, I ask you to rededicate yourselves to sharing ALL the data that has been collected and continues to be collected we have with each other so we can continue to work together to shine a light into the darkness of illness.
Thank you for what you have done and continue to do to improve medical care. Working with many of you was a wonderful and grand time, and I miss you.
I wish you and your family a happy and healthy New Year - and if you ever get to Maine, come and visit my kiln formed glass studio - joelkallich.art.
With much love and appreciation-
Joel D. Kallich, PhD
Surveillance, Epidemiology, and End Results (SEER), a program of the National Cancer Institute, see https://seer.cancer.gov/.