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.

How Are You? A Simply Complicated Question

Answering the question, “How are you doing?” should be a simple exercise.

"Fine." 

"Great!" 

"Amazing!"

Yet my answer ultimately depends on who is asking the question and how they’re asking the question.

A casual “How are you?” by someone who has not been intimately involved in the health drama of the past eighteen months, receives an unrestrained and unapologetic, “I’m fantastic.” Because, when I get right down to it, I am feeling relatively fantastic:

• I am cancer free and I have resumed most of the activities that were put on hold or restricted while I recovered from a multitude of surgeries.
• I am relatively breast symmetrical in clothing and, despite the scars, no longer feel as if I’m walking around sans body parts.
• I no longer assume every ache and/or pain is a recurrence of the cancer that caused an upheaval of my life in the first place.
• I resigned from my comfortable corporate job, parlayed my professional skills and personal passion toward transforming the healthcare experience and began empowering patients and caregivers through collaborative education and engagement.   

Did I mention I was CANCER FREE?!?

So, when I say, “FANTASTIC” I really, really mean it.

But when a dear friend and I catch up for hours and I am then asked the infamous, “How are you?” question, I pause. They really want to know.

And when a fellow cancer survivor asks the“How are you?” question, I pause again. They really want to know AND [insert my best Jack Nicholson impression here] they can handle the truth.

So how am I?

On a physical level, I am doing well.

Very well according to my surgeons and physicians but I am still plagued by pain and lack of muscular ability that can only be rectified by another surgery – one that I am absolutely not willing to schedule right now. I am allergic to Tamoxifen (the anti-hormonal drug that is supposed to keep cancer from returning) but the allergic reaction is preferable to cancer recurrence and any alternative treatments, so I take antihistamines regularly to stop erratic hives and swelling.

On an emotional level, I am doing well.

Very well according to anyone who hasn’t had cancer. I’ve returned to all the regular activities of a normal life. From the outside I resemble a no-name-taking, cancer-ass-kicking breast cancer survivor and thriver. But on the inside, I’m just me and there are a multitude of convoluted layers to the comfort and security I portray.

In other words, it’s complicated.

Artwork courtesy of my daughter

While I no longer assume EVERY ache and/or pain is a recurrence of the cancer that caused an upheaval of my life in the first place – the thought still crosses my mind more than 50% of the time.

While I’ve gotten the majority of anti-hormonal treatment side effects under control, I struggle wildly with others.

While I’m comfortable with my decision to undergo breast reconstruction, the realities have been startlingly different than the one-and-done type surgery I expected:  I rub on temporary nipple tattoos every few days and continue to try and regain the ability to do a full push-up.

While I no longer fear the abstract concept of death. I am still absolutely terrified every time I start doing the 5-year, 10-year survival rate math.

It’s complicated.

Perhaps a better answer to the “How are you?” question is: Grateful.

I am extremely grateful. For my husband. For my children. For my family and friends. For a wonderfully supportive and energizing community. For successful treatment. For the amazing people I’ve met along this journey. For opportunities to give back and opportunities to support others.

I am grateful for my life and all that it contains - including the complexity.