Why Cystic Fibrosis and Blockchain? by LittleLab4CF
Imogene
August 29, 2018
LittleLab4CF David Orthman, PhD
How can BlockChain facilitate Pharmaceutical companies go-to-market strategy?
The greatest barrier to doing business is inertia. The red tape will stop or stall any new commerce.
BlockChain can offer the simplest path from product to payment and delivery. First and foremost, Pharmaceutical companies eschew re-inventing wheels. The number of Scientific Papers that amount to analysis of existing Papers on any given topic have increased exponentially in the last two decades. These are valuable summaries for research scientists because somebody has already researched, accumulated, graded and correlated information for further work.
Consumer Genetics companies like Helix and 23&Me have compiled very thin genetic data from a large sample of the general population for sale to Pharmaceutical companies, Government agencies compiling health statistics and such.
Without the highest quality encryption, the depersonalized genetic profiles held by the consumer genetics companies probably have been or will be hacked and potentially millions of people’s most private information could end up in the wrong hands.
As a geneticist I have a sense of where the future of genetic data is going.
Robust genomic diaries are virtual gold mines for medical researchers.
Significant populations with quality genomic data is worth more than the sum of the individual diaries.
In the case of CF, a person 40 years old could conceivably have 40 years of medical records that represent an incredible data set. CF isn’t a visible disease, there’s no one specific health issue although a common thread of conditions emerge throughout the disease progression. In most CF patients at some time your pancreas dies causing a lifetime of maldigestion, malabsorption and generally type I diabetes. Any fluid or mucus produced by the body tends to be more viscous causing infertility in men, fertility issues in women, ear, nasal cavity, throat and lung infections deform or even destroy the sinuses, bronchiectasis develops, lung infections are constant and often untreatable, usually the person dies of pneumonia at a premature age.
It would be unethical to inflict the conditions that are simply part of a person’s life with CF or any of a myriad of rare genetic diseases. Taking advantage of the data being generated just to keep the optimum quality of life seems such a terrible waste.
Most rare gene people become de facto experts in their disease.
This makes them capable keepers of a robust genomic diary. We have a waiting population of CFers waiting for the tools, an Ap to log medical records and daily vitals and more. Entire populations of sick people due to rare genetic diseases or cancers that just might have a genetic trigger or a combination of genetics and phenotypic lifestyle. In other words, a Genomic Diary.
By teaming with BlockChain, people with rare genetic diseases, all types of cancer and lifetime chronic conditions, these “Professional Patients” accumulate volumes of medical data that makes for a treasure trove for Pharmaceutical companies, Government data statistics and such.
For example, the typical CF patient takes an average of 17 prescription or prescribed OTC drugs at any time, over the entire lifetime of the patient. Unlike the average person who may get a broad-spectrum antibiotic for a non-specific sinus infection, the infection load in a CF patient is great enough to justify prior analysis of the bacteria before anything is prescribed. In any given year a CFer will have one or more chest CT scans, maybe an MRCP, even nuclear medicine to track an occult infection. Daily vitals are routine with most CF patients not to mention the myriad of genetic assays, PFT’s, maybe a sweat chloride test for the diagnosis of CF.
From the pharmaceutical company’s perspective, the purchase of 2,000 Genomic Diaries from pancreatic cancer patients or a similar number of Cystic Fibrosis patients needs to be as simple and direct as possible. With BlockChain’s “safe deposit boxes” or a little highly encrypted bit of Cloud Memory, a company can acquire the depersonalized data set through BlockChain. The individual patients deposit their Genomic Diaries.
Coming NEXT:
How will improved transparency via BlockChain promote the shift away from a fee-for-service payment model?
