It started in the fall of 2001. In fact, the official opening was about a month after 9/11. The potential seemed limitless, and the future appeared to be incredibly bright. We would start a research institute, discover a few cures, design some specific drugs or vaccines, collect some tissues and the money to support us could easily be garnered through intellectual property, patents, contracted services, and value added research.
The first challenge that appeared was the question mark? "Windber?" They would say. "Windber?" No matter if it was a potential hire, a potential lender or investor, a prominent scientist or a health care luminary. "Windber?" They would say. "What is Windber?" "Where is Windber?" Many of them spelled it Winder or Wimber, and the fact that the CEO was not an MD or a PhD made it all the more ominous to the traditionalists. There were no major hits on Pub MED, and the only piece of information that was broadly recognized was that we were a DOD subcontracted research center. I remember Dr. Dean Ornish saying, "What do you want from me?" My response, "Help me take the question mark away from the word Windber."
Over the first few years, we traveled more than 200,000 air miles following leads that were produced from the Washington D.C. connections: Austin, Houston, Seattle, Miami, Boston, New York, San Jose, San Diego, Philadelphia, Las Vegas, Pittsburgh and Chicago to name a few. We met with companies and scientists all over the United States and then Italy, England, The Netherlands, Germany, Nigeria, Serbia, Greece and Asia. At one point, we counted over 200 organizations that "wanted to work with us," but, as we sorted the wheat from the chaff, we discovered that most of them either wanted to try to take OUR grants away, or just to leverage us to get to our grant sources.
During that time, we had several leaders go through our door: six to be precise. From 2001 to 2007, we attempted to stabilize the scientific and medical leadership role for the organization. Some did not like the lack of cultural stimulation in Windber and refused to move here. Others were intent on furthering their own careers by endearing themselves to our sponsors, while still others were just not comfortable with the culture that we were attempting to create.
Our original vision for WRI was to create a research center that was unlike any in the world. As a former professional musician, it was my desire to not build a theater and fill it with individual stars, but to create an ensemble, an interdisciplinary team of genomics, proteomics, histopathology and biomedical informatics specialists; to have the highest quality, largest and most pristine regulated, tissue, blood and serum collection; to have one central data repository; to literally build Disney World for scientists with the newest and most comprehensive list of equipment they could ever need, and then to tie it all together with fiber lines that allowed nanosecond communications of huge quantities of data. All of that would be wrapped around centers of clinical excellence that would help us advance our research by implementing/translating appropriate discoveries to the bedside almost immediately.
It was a dream that everyone now admits was, to say the least, bodacious, but it was ours. At first we ran into resistance because the PhD's were trained to be individualists. What's the old saying? There's no "I" in team. Then we ran into problems because there was too much data to be analyzed in the data repository and created a new group to analyze that data. Everyone had problems with the disconnect between Hospital Administrator and Academic, but things are getting better there on both sides, and what dream would be complete without huge challenges.
We made numerous discoveries regarding the truth or dare aspects of the world of science. What was truth? What was not? What was replicable? What was smoke? What was for the good of the patient, and what was for the good of the individual scientist? Just like the worlds of insurance, architecture, engineering, music or academia, there are always those who are better at wool pulling than reality, but that also goes with the territory. In fact, the only thing that was consistent throughout all of this was our Principal Investigator, Dr. Craig Shriver. He was our rock every day, week, month and year of this journey.
Our greatest challenge has been that of working with the bureaucracy that controls our finances. Generally, those within the bureaucracy are insensitive about timely distribution of finances, i.e., making payroll. No one cares if the interpretation of a rule removes an entire family from your employ, or alters the future of science for all of mankind. One of my most vivid memories was a discussion with a bureaucrat about the devastating consequences of a decision that was being made against our mission. She looked at me and replied in a very cold hearted way, "We don't care about cures for cancer." "This is about our interpretation of those words."
And so, eight years later, I can say with complete confidence that, like so many other systems at the national level, be it health care, science or government; It's broken, and change, comprehensive change is what is needed. We must find ways to create the appropriately aligned incentives so that scientist are connected at the hip on all projects relating to the good of mankind. Keeping the final ingredient to what may prove to be the secret sauce hidden in a computer is not acceptable.
We must also remove the aliquot syndrome and replace it with human interaction so that the scientist does not feel the lack of attachment to an anonymous human sample but instead looks that patient in the eye and realizes the intensity of the mission. To save the life of a 37 year-old with a four year old child is not aliquot theory. It is human to human.
We must find a way to move our research dollars away from pure basic science and toward big science. We must reward our pharmaceutical companies to seek out vaccines and individual treatments, not just blockbuster drugs.
We must find connecting links that make ensembles the future, not individuals.
Finally, we must replicate the model of the Windber Research Institute because, with all of its challenges, I'm still convinced that it is years ahead of the other more traditional science models. We study people. We share our data. We work in multi disciplinary teams. We actually meet our patients and hear them speak about the challenges of their diseases. We have MD's and PhD's working side by side. Our goal is to move answers from the bench to the bedside as soon as possible. We are passionate about our work and your lives.
WRI in Windber, Pennsylvania, is on track to break the rules to find the discoveries that will change healthcare for our fellow man in ways that could only have been a dream just seven years ago. Thank you to all of our dedicated scientists and employees.
The rest of you may consider joining us. We're outside of that box where you live, and out here there is an entire universe of opportunity. It just takes an ensemble to play the song.