MedTechVision 2014 Patient Keynote: Part One

By Lisa Maki,

Introduction

On Tuesday, September 9, 2014, I gave the Patient Keynote at the MedtechVision conference to over 200 accomplished women, mostly in the fields of medical devices and biotech.  The MedtechVision conference is dedicated to drawing out what is relevant and actionable in the Med Tech industry as digital health advances.  This was my opportunity to share my personal experience as a spinal injury patient, and how that experience inspired me to co-found PokitDok.

I’ve split my Keynote into two parts: In the first part, I discuss my injury, my frustration with the treatment options and lack of information, and how technology can and should be playing a major part in addressing patient engagement and concerns.  In the second part, I will share the ways our industry is making massive strides towards becoming consumer-focused and how digital health products, such as PokitDok, are transforming the healthcare experience.

Patient Zero

 Spinal Injury

I co-founded PokitDok with my business partner, Ted Tanner, who leads our engineering team and office in Charleston, South Carolina.  Our idea for the company was partially based on a personal experience I had with a spinal injury while studying karate.

Four years ago I was diagnosed with a synovial cyst.  I’ve been a lifelong athlete—I rowed crew at Stanford and taught snowboarding in Utah and somewhere along the way I did something to my spine. It sounds straightforward and not particularly serious now but the diagnosis took over six months with a lot of unnecessary treatment and drugs along the way.

One of the reasons it took me so long to get a correct diagnosis was my primary care physician was reluctant to prescribe an MRI until all other avenues had been tried.  This meant that for close to a year I was in incredible pain—I went from surfing and karate to not being able to make my bed without resting half way through.  I underwent a number of unnecessary nerve blocks with no lasting relief not to mention all the usual suspicions that I was just another oxycodone junkie.  Finally, reluctantly, my physician prescribed an MRI and my condition, as you can see, became clear.

There’s nothing like having a surgeon look at your MRI and say, “we need to operate immediately or you may lose all normal function below the waist”.  I had the cyst removed and the relief was immediate. After a month of low impact walking I was back to normal activity. Or, so I thought.  Unfortunately, I learned that synovial cysts often recur, as mine did, and my surgeon informed me now my only recourse was to fuse my spine.

Of course, for many of you that sounds like the right recommendation, and in many cases it is.  Some of you may even work for companies that make the hardware they would have installed in my spine and you have worked hard to make it safe and effective.  However, since I’m me and a huge part of my life has always been sports and a high level of mobility, I couldn’t accept that in 2010 the best American medicine could do for an otherwise active and healthy person with a synovial cyst was spinal fusion.

So, I refused and spent the next six months researching non-surgical treatment options through medical experts, my personal networks, trainers, and finally, in desperation, posting my condition on Facebook. It was that Facebook post that led me to a study conducted by Dr. Marc Dubick at Roper St. Francis Hospital in Charleston using HGH to treat conditions like mine.  I was accepted into the study and after three rounds of treatment, all paid for out of pocket because insurance won’t cover HGH injections, and a lot of functional movement training, I am pain free and able to do everything I did before.

 

Technology and Healthcare

I’ve been making software since 1989 when I started at Microsoft introducing digital solutions to many different industries, often for the first time.  As context, 1989 was the year Microsoft released the first version of Word for Windows. While there, I was part of a team that created some of the first graphical interfaces and even Microsoft’s first dial-up service for downloading data into a consumer product on demand. In those years software teams like mine spent countless hours in usability labs behind the one-way glass trying to figure out why no one would click on the buttons we’d designed.  Behavior we completely take for granted now. Since then, I’ve seen DOS disappear from the screen, Windows appear, CD-ROMs come and go, the Internet happen and mobile phones transform our lives with a lot of other amazing technology along the way.

I’m giving you this background to explain my amazement at the fact that in 2010, more than 20 years after I started at Microsoft, I found and made one of the most important decisions of my life, a medical treatment that would profoundly affect my mobility, not through the health system or searching the Internet but through a Facebook post.  To really drive the point home, Dr. Dubick’s office (the physician who treated me with HGH) was only one wing over in the same hospital from the orthopedic surgeon who told me I would have to fuse my spine.

Let me take this further.  I returned from Finland a week ago. Cousins there found me last year via a video of a talk I did that had been posted on YouTube. That doesn’t seem so unusual with sites like Ancestry.com until you know that my grandfather changed our surname after moving to the US and the family left in Finland didn’t know our new name. In other words, if a couple of long-lost cousins with a different name from a village in western Finland I’ve never heard of can find me on YouTube there is no longer any technical excuse for why my spine surgeon didn’t know about a study relevant to my condition being conducted in the same hospital less than 100 yards away.  But, let’s say, just for the sake of argument, that he did know but didn’t tell me.

Then why, when Google can scrape my email to display relevant ads about pain relievers didn’t Dr. Dubick’s name pop up when I searched Google for “non-surgical treatments for synovial cysts”?  I was just two miles down the road!  I’m belaboring this point because it is inexcusable for the health industry of a developed nation to be so far behind.  Moreover, there is absolutely no technical reason why I shouldn’t enjoy the same access to information about my healthcare that I enjoy in every other industry—the technical capability enabling a successful search for Dr. Dubick isn’t just available, it’s been available for years.

Throughout my personal experience my co-founder and I were so astounded by the lack of basic digital literacy that we decided to do something about it.  So, why did I think two co-founders with no healthcare experience could succeed where others had failed? Because two key components for successful innovation were in place: technical opportunity that was a great match for our skills and timing.

 

Tech and Timing

First, tech.  As I mentioned, neither my co-founder nor I have a background in healthcare.  However, we were no strangers to data and the challenges of connecting different sets of data.  We met at Microsoft Research working on a project, post Katrina and post the Tsunami, that attempted, at the request of the government and non-profits, to pull the world’s data together to for a more complete operating picture of disasters.  That included health data, population data, military data—so we were no stranger to wacky data formats that would talk to each other not to mention varying security requirements and how important connecting the data was to getting a holistic view on anything.  From there, we created a semantic data platform which took in any kind of data for analysis and we sold it in 2010 to a benefits data company called Benefitfocus where we built a new data model for all of your benefits data and spent a year and a half learning the health domain through its business data.

We were doing this at the same time I was going through my health experience.  While neither my co-founder nor I believe we have any business telling a health professional how to treat a patient, nor do I believe I really have any business telling any of you what to do about your health--that’s your decision--we both feel highly qualified to determine if it’s technically possible to do a better job of connecting and delivering digital services and executing on a solution.  Despite everyone from VCs to health industry experts telling us it was impossible, we knew the reason why information on product choice and cost was unavailable was not a regulatory requirement or due to technical limitations, it was a business decision. A business decision that had run its course.

We also knew that the technology needed to connect HIPAA compliant choice, quality and price data to deliver real-time, consumer-driven experiences, had existed for a very long time.  In other words, there was a huge technical opportunity that did not require a medical degree to execute; it required our technical experience and persistence.  In fact, our lack of experience with health was an asset because it allowed us to more easily imagine how the business of health could work rather than operating from today’s constraints.  It’s easy to think, “oh, they don’t understand health”, but I can tell you after a lifetime of introducing software into other industries that said the same thing, don’t be so sure.  We approached you as moms, dads, children, partners, artists, musicians, athletes, as people, and we designed what we want for ourselves and the people we care about.

Even though there was a technological opportunity that fit our skills it wasn’t enough.  Nobody likes change.  Entrenched industries with existing companies making a ton of money off of the way things are will resist change more ferociously than a honey badger. A significant change in market forces is required to overcome entrenched resistance.  For example, a lot of really smart people have tried to bring retail like purchasing and transparency to health care before PokitDok.  I get asked all the time by VCs and customers why I think we will succeed where they failed.  Part of the answer is they were too soon.  They recognized a trend but there was insufficient market momentum to support their solution and I argue insufficient understanding of consumer behavior. They were too early on the curve. In 2011, as we researched PokitDok, a critical market shift had sufficient traction to overcome industry resistance: I’m talking about the shift in who pays.

Long before Obamacare, the cost of basic health care was shifting from employers and insurance companies to their employees and members.  This shift in cost meant for the first time in years consumers would be responsible for paying for a majority of their basic healthcare.  And, when the average household has skin in the game behavior changes.  Consumers get more demanding and they change the market through how and where they spend money.  In other words, they start to shop. And, we are the consumer.

Stay tuned for Part 2 later this week, where I'll cover the ways our industry is making massive strides towards becoming consumer-focused and how digital health products, such as PokitDok, are transforming the healthcare experience.

The opinions expressed in this blog are of the authors and not of PokitDok's. The posts on this blog are for information only, and are not intended to substitute for a doctor-patient or other healthcare professional-patient relationship nor do they constitute medical or healthcare advice.

  Tags: Dev, Health Innovation, Healthcare consumerism, Providers