Monday, June 1, 2015

Cancerversaries, Neuroses & the Beauty of Choices

While I loved the powerful irony of spending the two-year anniversary of my cancer diagnosis at a conference filled with professionals targeting the annihilation of the disease, I stayed home this weekend. Instead of flying to Chicago to attend the American Society of Clinical Oncology (ASCO) annual meeting, I spent the weekend with my family. On Saturday, we power-shopped for an 8th grade promotion dance dress. We spent the afternoon reconnecting with friends at a Camp Kesem SCU Reunion. A walk, frozen yogurt, popcorn and a movie followed.

Because May 30th was a cancerversary.

Exactly two years ago, during a memorial for a friend’s mother, I took a call from the surgeon who performed my excisional biopsy. I was already in tears so, when she told me that I had breast cancer, my new tears of fear bled into the slow trickle of wetness that was already on my face.

Six months later, I attempted to take back the 30th by throwing an enormous Gratitude Party for all those who had supported us in what we now refer to as “The $hitty Summer of Cancer.” And, at that time, I just desperately wanted to wear the Won and Done mantle and move on with my life.

That didn’t exactly happen.

Significant reminders exist. Scars both physical and emotional. And I still commemorate all the dates around scans, biopsies, diagnosis, second opinions and surgeries. They are all my cancerversaries and, like it or not, part of who I am now.

Over the past two years, I’ve learned that survivorship is not always simple. While day-to-day my own mortality is no longer at the very forefront of my mind, occasionally it rears its head wildly, as it has these past few weeks, leading up to significant dates.

Moments of surreal, unfounded, neurotic panic have flooded the quiet moments. In the month of May, I am attuned to just how quickly life can change. I vividly remember going from baseline mammogram to sitting in the radiologist’s office. I vividly remember the wire location exercise prior to my excisional biopsy. I vividly remember the 80s music playing in the surgical suite. I vividly remember that phone call.

 And I vividly remember the fear.

I remember feeling overwhelmed by that fear while I wore the emotional shield of empowered pragmatism. I remember hearing “brave” and feeling terrified. People have mentioned post-traumatic stress in the same sentence as cancer for a reason - the experience is, as an understatement, traumatic.

The fact that this May also brought a brain MRI and an endometrial biopsy, did nothing to relieve the anxiety-riddled memories. However, sitting around the house urgently thinking “I NEED to make NEW memories… NOW. Right NOW!” was probably the biggest clue that something might be amiss.

In reality nothing was or is amiss. This is survivorship, or just plain life, after a cancer diagnosis. There are weeks and months of fabulous days and then a few intense moments in between where recurrence, metastasis and mortality are heavy on my mind.

Occasionally those moments of intensity can be crushing.

Ultimately a moment of intensity a few weeks ago led me to the decision to miss out on the people and presentations that make up the annual ASCO meeting. If I attended the meeting, I would miss out on making memories with my family. And, when feeling the intense need to live a condensed life, every memory counts.

As the meeting approached, I was bummed to miss out. Yet, as the meeting kicked off, I realized that not being THERE allowed me to be HERE. Even so, it took a few days for me to settle in to the wisdom of my choice.

Perspective is a funny thing.

Instead of seeing the latest research presented by the researchers themselves, I was able to shop for a semi-formal dress with my daughter who is typically loathe to don anything but jeans and a t-shirt. Instead of spending a few valuable days with amazing patient advocates and brilliant advocates for patients, I spent an afternoon with my son working on his First Aid merit badge. Instead of attending a Tweetup, I snuggled with my husband on the couch with a bucket of buttered popcorn and watched a Redbox movie projected on our living room wall.

And I celebrated a cancerversary with my family. Rather, I celebrated and they kindly acknowledged.

There was no cake. There were no candles. But I am here and that is a fact we are all equally grateful for, even if the emotional highs and lows around these anniversary dates don’t always make sense to them. 

(Hell, they don’t always make sense to me.)

Survivorship is fraught with ups and downs but time seems to be easing some of the larger issues. Exactly two years after a breast cancer diagnosis, I noticed that all my “big decisions” this weekend were categorically unrelated to treatment and my fears of missing out were absolutely unrelated to life and death. In retrospect, my thoughts this weekend never once reflected on losing both breasts as well as my peace of mind.

So why celebrate some of the most challenging dates of my life? Why do I choose to remember? Because they are days and emotions I can never forget and, if I’m going to acknowledge them, celebrating seems to be a helluva lot more fun than “commemorating."

Celebrating a cancerversary means I’m still here and still able to make choices. And, no matter how difficult, there is beauty in the ability to make choices. There is incredible beauty in just being on this planet another day. And, with that perspective, I can clearly see the beauty in just living life and every beautiful neurotic moment!

Pink Hydrangea
Gratitude Party gift & General Life-is-Beautiful Reminder

Tuesday, April 28, 2015

Unexpected Results & a Two-Way Street

So, that didn’t go exactly as I’d expected.

I’ll preface this entire post with the phrase “I am fine” and “It’s not cancer” before anyone gets too concerned. In the next however many words, I feel compelled to share one of the most stunning personal positive examples of patient/provider communication I have encountered.

Just over a year and a half ago, I began taking the drug Tamoxifen to keep my estrogen loving cancer away. Within a couple weeks of beginning the drug, I noticed a flurry of side effects. One such side effect was a tingling in my lips. My much adored oncologist explained, “Tamoxifen is very drying, so it could be dehydration. Or, it could be a brain tumor.”

{deafening silence}

“It’s not a brain tumor!” I insisted.

She smiled, “It’s probably not. Let’s watch it.”

So I watched it.

I watched it continue to get worse.

In April 2014 I went to see my oncologist for a six-month check-up and to bid her a fond farewell before her maternity leave and subsequent resignation from the practice. When I mentioned the tingling had not only continued but had expanded, she ordered an MRI.

“It’s NOT a brain tumor,” I insisted again, much preferring to blame this and every other negative or annoying body ache-pain-swelling anomaly on Tamoxifen.

“I’m an oncologist,” she smiled reassuringly. “I think everything is cancer!”

On May 2, 2014 I had a brain MRI with contrast - the results were “No Intracranial Metastasis.” 
A great big happy dance ensued and life continued. While officially my face tingling was considered idiopathic, I have spent the past year happily blaming it on Tamoxifen*.

Most of my Tamoxifen side effects ebb and flow but in March my left side tingling had progressed to a numbness so severe I  found myself rushing to the mirror several times a week to check the symmetry of my face. No drooping? No problem.

Not really. I was frightened.

Rather than make an appointment with my new and not-so-favorite oncologist, I made an appointment with my beloved primary care provider who subsequently sent me immediately to a neurologist. And that is how I ended up back in the claustrophobic loud tunnel yesterday afternoon, lying very, very still trying to imagine only best case scenarios, counting backwards from 1000 by 3s.

The MRI/MRA test results arrived in my email inbox within four hours – an absolute record! Since I was receiving results via email, I knew the results could only be “This is nothing, have a good day!” But when I opened them, this is what I found from my neurologist:

I've reviewed the results of your recent MRI. This test shows no abnormalities to explain your symptoms on the left face. This is good news.

The radiologist wasn't able to definitively say but thought perhaps there is an aneurysm on the right side. He recommends that we get a follow-up view of the vessels in 6 months. If we do find something there, the size of it is so small that at this point it would not warrant any treatment. We will do the follow-up MRA that he recommended. I've ordered it for you today and as we get closer someone will contact you to schedule it.

UH. Uh?!?

The first two sentences were expected, the second paragraph was not. An aneurysm? An aneurysm? Those are bad. Like really bad.

I run, I cycle, I get excited at ball games, I get wound up when my kids don’t do their chores. And I might have a blood balloon ready to pop in my noggin?!

The first five minutes, I did nothing. I just thought, “It’s not cancer. That’s good. That’s REALLY good. But… uh…”

Perhaps I should have prefaced the results email with the fact that I met my neurologist merely 10 days prior to the MRI. She quickly made me feel at ease with her active listening, eye contact and what I felt was genuine interest in me as a person. In our short visit she asked all the right follow-up questions to make me feel that I was far more than a set of symptoms to her and I walked out of that office feeling as if we’d developed a plan together. I sent a follow up email thanking her for all of the above.

Since, prior to the noisy tunnel visit, we had already exchanged a series of gratitude related emails, I turned to technology one more time with the following:

Thank you for the lightning fast turnaround on my test results! Unfortunately while I expected the first part (and am THRILLED there are no growths/tumors in my noggin!), I was a bit taken aback by the mention of a possibility of an aneurysm. I realize it is simply the word itself that makes me nervous since I associate it with catastrophic health events.
I also realize that the radiologist was unsure so this is a 'maybe' option anyway.

That said I have a few questions:
~ Beyond returning for another scan in 6 months, is there something I should be on the lookout for (beyond the obvious signs of an active stroke) and/or be concerned about?
~ How common are similar tiny aneurysms in the general population?
~ Are the images available in my online EHR? Can I get them?

Again, thank you for the swift return of results - very much appreciated!

I read my email several times just to ensure my extreme anxiety was carefully veiled with overtones of pragmatism before I pushed send. Thankfully, she saw through my attempts at a cavalier attitude and responded immediately with:

Yes this is a "maybe" and not terribly concerning.
Still I get the concern that that word creates and that is appropriate concern. We all have heard of this word associated with really bad things.
Small aneurysms are fairly common in the general population and in your case we call this an "incidental finding" meaning that we found this only because we were looking for other things, not because it is related to your symptoms. 
Given the small size if we find it again and it is still this size there is not much we can do other than continue to do follow-up scans. However, the follow-up scans are important because it can change in size (increase) and then we would consider treating it to prevent the risk of rupture.

The things to look for are just as you would expect: stroke like symptoms.
Also a very very severe and sudden onset of headache would be concerning.
For either of these things you should plan to come to the ER for evaluation and let them know about your prior MRI findings.

CALLING ALL PROVIDERS: please re-read that email snippet one more time and let me point out the highlights, from a patient perspective.

Clinical Reality: Yes this is a "maybe" and not terribly concerning.Patients NEED this and expect it from you as their trusted healthcare provider. If I trust you, I trust your professional opinion.

Emotional Validation:Still I get the concern that that word creates and that is appropriate concern.” Patients NEED this too. With these words I was completely validated as a human being with emotions and therefore much better suited to hear and trust the clinical realities. With those words, she leveled the playing field for me. She had understood my concerns and acknowledged they were valid concerns. And, feeling heard, I could trust her original clinically related statement – this is not terribly concerning.

The combination of acknowledging my anxieties, providing the clinical reality and adding the appropriate additional information to answer all of my articulated questions, took my stress level from an 11 ½ to a 4. With time, I expect that level of anxiety to continue to decline. Also, I tend to be easily distracted so a ‘maybe aneurysm’ will surely get boring after a bit.

Unexpected results such as these could have created quite the emotional quagmire. In fact, I've been in similar quagmires before. Had I sat quietly with my results and my fears, I'd still be sitting with both. The patient/provider relationship is a two-way street. Had I not reached out via email with my concerns and questions, my need for validation, reassurance and answers would not have been met. Had I reached out and not received emotional validation along with the clinical realities, my needs would not have been met either. Those unmet needs could have led to another time-consuming appointment or, perhaps worse, elevated cortisol levels and the invasion of unnecessary excess anxiety.

While the results were definitely not what I expected and I am still without a clear diagnosis on my face numbness (although trigeminal neuralgia is in the running whenever I feel like letting Tamoxifen off the hook), thanks to honest communication between patient and provider, I actually feel more comfortable today than I felt yesterday.

*Similar to many others, my Tamoxifen side effects suck and I’ve often referred to the drug as “a safety net made of razor wire.” That said, I made a decision to take the drug for one year as prescribed and then re-evaluate for the next year. I’m on month 20 and will either drop it or re-enlist on July 17, 2015.

Wednesday, March 25, 2015

Death in the Family: A Conversation Catalyst

Last night we held a good friend in our arms as she died.

Our good friend was a mouse named Basil but the process of dying and our being present was no less significant to my children than had Basil been a human friend.

My husband and I were walking swiftly out the door when my daughter first called out, “MOM! MOM, I NEED you!” Since my daughter is not afraid of spiders or any other creepy crawlies, I expected something along the lines of a teenage feminine problem and was surprised to see the mouse in a fetal position in her hand. Instantly I assumed, as had my daughter, that our littlest pet was dead and, as I gently scooped her up, I was a bit startled to find her still warm.

My son and husband joined us quickly and I explained she was still alive but not for long.

Suddenly the errand of the evening was insignificant compared to bearing witness to a family pet’s final moments.  Actually, what I assumed were final moments stretched into lengthy minutes and we stood gathered in my daughter’s room speaking in low, soothing voices.

This is not the first mouse death in our home. A few months ago, I held Basil’s sister Rue as she took her last few breaths. The difference this time involved my husband and children’s participation and an active conversation around end-of-life decisions and consciousness. We spoke clinically of the processes going on (the twitches and erratic breathing were especially disconcerting to both children) and we spoke from the heart about wanting to be with her in her final moments.

Rue had died very quickly in my hands under similar circumstances and my daughter never touched her. She was unnerved and a little afraid. With that memory still fresh, I was thrilled to note that this time my daughter had actually scooped her out of her habitat and that everyone felt comfortable enough to gently stroke her fur.

“Do you think she wants to die?” she asked. “You know like people who are just done and choose to die days before they actually do? Does a mouse think like that?”

“I don’t know,” I said. “I really don't know.

“Do you think she’s conscious?” she asked.

“I don’t think so but, either way, I don’t want her to die alone,” I answered.

If you’ve been a longtime reader of this blog, you’ll know that among other things, helping to demystify death for my children is important to me. The catalyst to remove some of the associated fear and aversion to conversations around end-of-life has been generated in large part by cancer and the multiple diagnoses and death of many friends and family. Ironically, my own turning point with end-of-life came slightly before the onslaught of cancer diagnoses, through the death of my grandmother, just over three years ago.

As we continued to hold and stroke Basil, our conversation continued around what senses remain in those final moments. I spoke softly to Basil and thanked her for her being such a wonderful snuggly pet. And I asked every few minutes, “Do you want to hold her?” My children responded by gently stroking her fur but neither child offered, asked or indicated a desire to hold her.

My son noted the cyanosis quietly, “She is getting very pale.”

Indeed her normally pink feet and nose had developed a greyish hue. “Yes, the oxygen in her blood is very low.” 

As her respiration became more and more erratic, her body would spasm slightly. My own self-doubt played intermittently yet silently through my head, “Is this the right thing to do?” “Does she want to be held?” “Is she in pain?” “Gah! What should I do?” But my outside mannerisms belied any internal ambivalence and I went with what felt comfortable: being there, holding her, talking out loud about what was happening and supporting my family.

Basil’s respirations ceased being visible but I could feel her heart beat for another several seconds before everything stopped. “She’s gone,” I said. “I’m very glad we could be with her.”

A few more tears were shed and then the search for the appropriate burying box began.

The death of a loved one, be they furry or fleshy, is difficult. But the death of loved ones is an inescapable part of life. Thank you Basil, for the two plus years of enjoyment you brought our family in life and the lessons you taught us all in death.

Sunday, March 22, 2015

Authenticity: Walking the Walk

When I speak with new cancer patients, I always remind them to be authentic with their feelings. If you feel like a warrior, let loose the battle cry; if you feel like the victim, sob fiercely into the belly of your cat; if you feel angry, shout it out; if you feel frightened, reach out to the closest warm body for that hug. Whatever the emotion, just allow yourself to feel what you need to feel, when you need to feel it.

And, when I speak with individuals trying to find their way on social media, I always remind them to be authentic in their communication and their representation of themselves.

Yet I realized through a few key interactions with others, I’ve hidden a portion of the real me for what I assumed was the benefit of protecting others feelings – or my perception of their feelings.
On Twitter, I share my thoughts, opinions and feelings as a cancer survivor amongst my thoughts on cycling, gardening, running, etc. On my blog, I write openly about my fears and my conflicting emotions regarding survivorship and my activities pursuant to improving an imperfect healthcare system.

Even Google+ gets an update every time a new blog is posted.

Yet on Facebook, I passively shield others from the cancer-related facet of my life preferring to upload photos of my children and tandem bike rides with my husband. On Facebook, people are only getting half the story.

A new but very dear friend has unwittingly exposed this dichotomy through her own authenticity. Corrie openly posts about successes and challenges in trying to cure cancer and openly calls out the barriers amidst the day-to-day sharing of her family’s escapades. She actively seeks collaboration to cure rare disease and delights with photos of her children making lemonade. 

Her authenticity has made me reflect on the social media separation I have created in my own life.

Rarely do I share my healthcare-related blogposts via Facebook, yet Twitter is the first place I announce a new post. I am incessantly tweet-singing the praises of local, regional, national and even international cancer support and research organizations yet few of these make it to the Facebook platform. And I spend an incredible amount of time linking people and organizations together yet I have avoided making any of these connections via Facebook, lest it unsettle my friends and family. 

Ironically, the individuals linked to my Facebook account are some of my closest friends and family. They are the same ones who cared for my children, brought meals, sent flowers and transformed my front garden during the darker days of my diagnosis and treatment. They are the same ones who, on the six month anniversary of my diagnosis, joined me and my family in the great “Gratitude Party” celebration. And, ironically, they are the same ones who showered me with support as I chose to make a rather abrupt and non-traditional career change.

And yet I have subtly removed these people from a huge portion of my life by omission. So exclusionary are my conversations, many of them don’t even know what my work entails.

There was no malicious intent. Thinking deeply about the path to social duality, I believe I projected a bit of cancer-fatigue on these friends and family. I was tired of cancer talk so I assumed they were as well. Yet, when I created a new career around advocating for patient inclusion and expanding the general healthcare system’s view of the patient experience, I felt a bit of anxiety around sharing. I assumed cancer talk depressed people who weren’t/aren’t forced to think about the intricacies of diagnosis, treatment, recovery and, in large part, mortality, and I honestly didn’t want to bring people down.

In the past week, I realized this omission is actually a disservice to those that I care about and perpetuates the siloing of information I detest so strongly. Information and access silos are the bane of researchers, physicians, caregivers and patients everywhere. Information silos are barriers to the collaborative research that will lead to more effective treatments. Access silos are barriers to critical support and treatment information. Friends and family are not immune to their own healthcare battles and the current collaborations could be useful to them on a very personal basis. Moreover, the people who I am friends with are rife with their own redeeming qualities, many of those qualities helpful in building collaborations. By default, I have been exclusionary and I have underestimated an entire group of amazingness.

I have spent almost two months fostering a #IWishMyDoc/#IWishMyPatient hashtag campaign in partnership with the Flip the Clinic organization. The campaign that strives to bridge “the gap between patient and physician, with health, wellness, and shared understanding at the center.” Yet I’ve kept these efforts mostly sequestered to Twitter. Yesterday, Dr. Iris Thiele Isip Tan published a very personal blogpost on the #IWishMyPatient campaign. At the end of her post, she writes, “I must confess that this was not a comfortable post to write. But thanks for the opportunity Stacey!” I sat dumbfounded at that statement, overwhelmed with gratitude for her efforts to move outside her comfort zone to push the veritable ball forward. And I thought, “I must do the same.”

So while I can apologize in advance for adding a bit more to the data stream, a more appropriate apology would be directed toward those I have passively excluded for fear my healthcare-related posts would be annoying or overwhelming. I will continue to talk the talk and I will continue to walk the walk. And I will work on extending the whole of my authenticity across the whole of the communications space.  

As I tend to say prior to my involvement in any active tweetchat, “Please, please, please join the conversation, read along and learn or simply ignore [the extra information].”

Monday, February 23, 2015

Flipping the Clinic with #IWishMyDoc/#IWishMyPatient

Three weeks ago, we kicked off a simple hashtag campaign to help provide context, build understanding and generate empathy between patient and clinician across the healthcare space.

In the month of February, we have had 257 patients and caregivers participate in the #IWishMyDoc campaign and 163 clinicians share their #IWishMyPatient thoughts. Leveraging the power of social media, these individuals have helped make over 5 MILLION impressions in the Twitter sphere. But most importantly, many of these thoughts have led to honest suggestions and thoughtful conversation.

Patients have offered waiting room and office management suggestions as well, reminders regarding considering the mental and emotional load that comes with many appointments and a wish to be seen as a whole person versus a set of symptoms:

And participating physicians have been vocal about empowering patients to find their voice:

If you have not already shared your thoughts, please join us for the one week left of our #IWishMyDoc / #IWishMyPatient campaign. Consider sending a link to the original blog (below) to your friends and family network to encourage participation amongst health care providers and patients.  

And remember, healthcare doesn’t need to remain an illness model - and EVERYONE is a patient in the context of general wellness. What do YOU wish your doctor said/provided/understood?

Wednesday, February 11, 2015

Being Mortal: Demystifying Death with My Teen

As my children finished their homework at the kitchen table, I quickly reviewed my Twitter feed and immediately began tripping over #BeingMortal hashtags. A quick investigation led me to understand Being Mortal was actually a PBS Frontline presentation with the esteemed Dr. Atul Gawande and I publicly bemoaned not having a television set that I could tune in on.

Almost immediately, I received the following response to my tweet:

I clicked the link and was soon taken in by the words, “Often times what we say, as physicians, is NOT what the patient hears,” from a palliative physician.

My son had already scooted off to shower but my 13 year-old daughter sat across the table from me, within audio earshot but out of view of my laptop screen. Occasionally she glanced toward me and I would describe what was happening on screen. Within 15 minutes, she was standing over my shoulder as together we watched Bill Brooks say, “There has to be a third option.”

I moved us to the couch and she cuddled next to me.

For the remainder of the program, we exchanged commentary on doctor behaviors (lack of eye contact when giving bad news bothers me) and on patient conditions. I mentioned I was sad for the woman who wanted to take her grandchild to Disneyland and that I was really irritated that IV medications were the reason she was told she couldn’t die at home. She knows I am adamant about honoring patient wishes.

My daughter was taken by Jeff Schultz and she commented multiple times on the beauty of his farm.
I was impressed by Jeff’s ability to have the hard conversations and continue to make his wishes clear.

We were both shocked at the swiftness of his death after his last interview with the camera.

And we both agreed that his dying at home, surrounded by beauty with the opportunity to say goodbye to loved ones, was a good way to die.

I was 38 years old before I was able to view death as a natural end to a good life. I held the hand of my grandmother as she made her decision to die

Prior to that moment, and certainly as a teenager, I was afraid of anything related to death. I have a strong desire to help demystify the process for both of my children. Cancer has played a big role in our family’s last few years and those deaths seem to come more swiftly. I do not want my children to view death as a failure, I want them to see and I want them to understand that a good death is only a part of the whole story. Ultimately, it falls back to making the most of the time we have.

So why would I sit and watch a show about death with my young teenager?

I wouldn’t.

This program was not simply about death. It was, as it was aptly titled, about being mortal - on both the patient and the doctor side. And there were many layers to explore. I was happy to see her witness doctors who were unsure and questioning. I want her to know that her care provider is human, fallible and that the empathy and authenticity must run both ways. And I was thrilled to show her several patients who had a voice, who made their wishes known, who had the hard conversations and were therefore able to spend their final days in the best possible way, for them. To raise a generation of health-literate and empowered patients, we must start with the youth.

The program ended and I kissed her head and thanked her for sharing the time and the topic with me.

Unprompted, my daughter reminded me, as she had almost a year ago, that she was not afraid of death, she just had too much still to do

And she skipped off to the shower to get on with life.

My 12 year-old didn’t watch the show, he’s not very comfortable discussing or even hearing about death. I want to respect that and I understand that the death of loved ones and our own family cancer struggles are still too fresh in his young mind. And this education is nothing to force. Everyone has to find their own comfort zone. I’ll be here when he’s ready.

Thursday, January 29, 2015

A Personalized Medicine Conference: From the Patient Perspective

I’ll admit that I was na├»ve 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.