People often ask me what inspired me and what motivated me to start up Rare Patient Voice. Turns out they were two very different things.
Several things and people inspired me. In 1998, I had begun working for a healthcare market research company, Migliara/Kaplan, and a client, Jim Sharples, who at the time worked for a pharmaceutical company, came to us and asked if we could build a Hemophilia patient panel. Their company made factor to treat bleeding disorder patients, and they wanted to hear directly from patients their opinions about products and services. We weren’t sure if we could build such a panel, and we went to our head of field operations in those days, Marc Codella. We figured we could go to patient events, like the National Hemophilia Foundation, and set up a booth and ask people to join such a panel. It worked! We created a panel and they would do various surveys and interviews. We saw that the patients and caregivers, typically parents in this case, really liked that their voices would be heard. So I was inspired by Jim Sharples, Marc Codella, and the patients themselves.
After a few years, other clients in the hemophilia space came up to us. They said they heard we had a patient panel, could they access it? But since we had built if specifically for one client, we couldn’t allow that. But that put the idea in my head – is there a place for a patient panel to take part in all sorts of surveys and interviews with various companies?
That idea was in my head for many years. I said, someday I’m going to start such a panel. So I had the inspiration, but not the motivation. The motivation came in 2013. One company I was working for merged, and they had other people to do the job I was doing. And another company ran into a cash flow crunch – what business hasn’t experienced that? They asked if I could work for a few months without a paycheck, and get paid back later. I figured if I wasn’t going to be paid, maybe there was something else I should do. I applied for some other jobs, but when you get to a certain age, you don’t always get called back. So now I had motivation – my idea of a patient panel seemed to have market demand. And the final piece came into place. My wife had been out of the workforce for 10 plus years, raising our kids. She was looking to go back to work now that they were 10 and 12. At the same time, she found a job locally and it had healthcare. Perfect! I would stay home and start up the company.
So my motivation was that I had to be forced to! If I had continued at my old jobs, I never would have had the push to start a new company. Sometimes you just have to be given a big push.
Which reminds me of the famous quote by Thomas Edison, “Genius is 1 percent inspiration, 99 percent perspiration.” Now, we’re not talking about genius in this case! But it is true, inspiration only carries you so far. In my case, I needed the motivation, and then the perspiration to actually build the panel and the company. And now we rely on the perspiration of the many people on our team!