Thursday, January 29, 2015

A Personalized Medicine Conference: From the Patient Perspective


I’ll admit that I was naïve last year when I knocked on the virtual door of the Personalized Medicine World Conference (PMWC). At the time, I was just months beyond a breast cancer diagnosis and highly motivated to drive change in the health care paradigm. When I saw the words “Personalized Medicine”, I assumed I’d found the place where patients were finally placed in the center of the circle.

I was quickly informed that “personalized” referred to the science surrounding the genome and that the conference was not patient focused. For a couple of months, I went back and forth with the organizer before suddenly the bent shifted and an entire Patient Track was created.

Ten days after yet another surgery, I attended the two-day PMWC14 conference. And was delighted by the patient-focus in the track led by Cancer Commons. I was asked to share my story and participated actively in providing feedback on products and processes that were shared over the course of the conference. Researchers, physicians and organizations reached out to me post-conference to ask more about how they could improve the patient experience. I felt as if the imperative shift from personalized medicine to PERSONalized medicine was in motion.

A year later I was dismayed to discover there was no patient track for PMWC15. How did patients suddenly fall out of favor? After all, as well all know, without patients, medicine is just a lesson in hypothesis and a purely academic endeavor.

But I attended anyway, determined to ask the right questions to the right people so that the right information can be shared with the right people at the right time in the right way. Right?

And I learned.

FACT: Everybody (and their uncle’s brother’s cousin) sees the correlation between positive clinical outcomes and tailored patient treatment based on genomic indications. BUT: Whole genome sequencing (WGS) and whole exome sequencing (WES) are still not accessible to all. In fact, not even cancer genome sequencing is available to most.

FACT: Technology and the ability to churn through massive amounts of data to find correlations are critical to being able to leverage genomic data (and all clinical data) to the benefit of the patient. BUT: Data itself is not the value. Algorithms that help make sense of the data are vital. And patient-reported-outcomes rarely figure into the mix.

FACT: The healthcare industry sees the value in sharing data across the globe. BUT: Silos still exist. In fact, silos are still the norm.

Brilliant minds and early stage innovations abounded from the patient-facing presentation by Martin Naley of pre-launch CureForward to the backend drug discovery and longevity research by Most Promising Company award winner Alex Zhavoronkov from In SilicoMedicine.

And then there were the luminaries. Hearing from CraigVenter – one of the first to sequence the human genome; chatting with GeorgeChurch – a founder of the Human Genome Project about how to free the data; and listening to Kim Popovits from Genomic Health – a company I am forever indebted to for the creation of the OncotypeDX test that helped me back up my refusal for chemotherapy with science; were absolute highlights.

After three days of presentations, panels and coffee line conversations I am amazed by the scientific progress yet quite frustrated by the lack of clear execution plans that make these innovations accessible to all physicians and ultimately all patients.

Oddly, the best news is these brilliant minds seem to share my frustration. This is the best news not simply because frustration loves company but because they are actively trying to rectify a few things.

Physician Rusty Hofmann shared a very personal story around the criticality of getting right information at the right time especially around non-standard situations and created Grand Rounds Health in order to help connect patients to specialists.

During the Promising New Companies presentations, John Adler CEO of Cureus shared his company’s mission of an open source medical journal that breaks down information silos by removing barriers to publication.

And, in what was one of the more patient-focused presentations, Brent Vaughan CEO of Cognoa, shared his company’s model of putting a diagnostic tool directly in the hands of parents in order to evaluate developmental delay potential and accelerate early intervention.

The environment was one of collaboration and sharing and the challenge will be continuing the collaboration after everyone has returned to their day job, their area of focus and, sadly, their silo.

From a learning standpoint, the conference was fantastic. 

From a patient perspective, I feel that exactly one year later, the biggest innovation is STILL yet to be operationalized: putting PERSON front and center in PERSONALized medicine – not simply in word but in practice.