I have to pinch myself. I can’t believe it’s actually happening. Someone finally gets what I’ve been saying all along–and took it a step further to figure out the all important how-to-make-it-happen piece of the puzzle.
“If you want to increase recruitment and retention in clinical trials, stop treating patients as mere faceless donors of data.”
We are so much more than just a percentage or a slice of a pie chart. We have rich, full lives, often compounded by the hurdles created by our illnesses.
The Impetus of Change
It seems like a very long time ago when I met Abbe Steel, CEO of HealthiVibe LLC, at Disruptive Innovations in 2012. I was the guest of Craig Lipset, Head of Clinical Innovation, R&D, Pfizer, Inc., who interviewed me on stage regarding the blog I wrote chronicling my clinical trial experience.
The internet has leveled the playing field becoming a place where the once faceless study volunteer can now hold court with top Pharma execs. And because of this, there is a paradigm shift occurring in the way research is driven. When it comes to impacting study design, the patient may not be in the driver’s seat fully, but they are no longer relegated to ride in the trunk.
Their voice finally matters.
With a Wi-Fi connection and a keyboard at the ready, patients are usurping the power and redefining what is important to them as the leading stakeholders in research. Elevating patients from once lowly lab rats to the distinguished position of partner, the internet, social media, smart phones, tablets, and wearable fitness gadgets are all tools enabling this empowerment.
So the dilemma became apparent as I sat on that stage with Lipset. I saw at once the awe and curiosity mixed with fear and loathing that this sea of pharma faces had for me. I realized what a messy situation we study participants/users of social media had made for them. But I also knew that they needed to be brought into the 21st century.
You’re not going to stop a study participant from using the internet to learn about their condition. And you can’t make them give up social media or their smartphone apps by forcing them to initial in three places and sign by the X. So instead, why not harness the internet and include the patient to improve the way research is conducted?
When I met Abbe, there was an instant connection. I could see that she gets it. Over the ensuing years, we remained in contact and when she reached out to me early this year to say she was leaving her former position at UBC to start something new, I was excited. Not just for her, but for the future of research. I knew that, with Abbe’s drive and vision, exciting things were about to take place.
She wanted more from life than just a paycheck and title. She wanted to make an impact on research, capture the voice of the patient, and serve it up to Pharma to digest and incorporate in a meaningful way so that future studies were more thoughtfully designed and considerate of the patient perspective.
When she conceived the idea for HealthiVibe LLC, she invited me on board and I jumped at the chance to help her make a difference. The goal is to capture the patient voice through interactive, exploratory research, in-depth interviews, and crowdsourced input from real patients living with illness.
An Ever-Changing Leading Edge
So here we are, not just talking about making trials more “patient-centric” or wondering where “real world data” will come from. We are riding the wave, and finding the ever-changing leading edge of impacting trial design.
As HealthiVibe continues to grow and evolve, so will the part that I play. For now I will be bringing you patient voices in their own words. I will be reaching out to other study participants and people living with chronic illness to profile their perspectives.
Like the rest of HealthiVibe, this blog will be redefining itself as we go along. I can’t tell you how often I’ll post. It may only be once or twice a month, or I may be inspired to write more often.
After all, I’m a person living with a chronic illness myself. I’m not just a blogger, but a freelance writer, an artist, a mother, a grandmother and a caregiver to my elderly mom. My plate is full, but I’m excited to be part of a company dedicated to elevating the patient voice and affecting measurable change in the design of clinical trials.
There’s a lot of exciting changes taking place in the world of research and I’m thrilled to be witnessing it from the leading edge. So stay tuned and follow along as I bring you more from the patient side of the clipboard.
If you are a patient living with a chronic illness, or have participated in research, I’d love to give you the platform to share your story through our blog. Contact me for details.