One of the main reasons why our healthcare system is ranked as the worst among high income nations is because of the lack of transparency. No one understands what things cost, nor do they understand enough about how they can take care of themselves to avoid the costs. We have this endless cycle of more and more healthcare costs and consumers not being smart about their health because they don’t have the information they need. When you buy a car, it comes with an owner’s manual. Everyone from an early age needs their own “owner’s manual” of sorts instead of playing lip service to health education. With 90% of disease being preventable, we need to come up with a much more interactive and engaging way to educate young people on how to keep the human machine alive.
Ihad the pleasure to interview Lynn O’Connor Vos, President & CEO of the Muscular Dystrophy Association. Lynn is a former pediatric nurse and an industry veteran credited with helping transform the marketing of healthcare. She is committed to accelerating treatments, cures and care together for every MDA family.
Can you share the most interesting story that happened to you since you began leading your company?
When I joined the MDA a year and a half ago, I was completely intrigued and turned on by the organization’s mission of transforming the lives of those living with neuromuscular diseases. There is so much to be done in the neuromuscular community and the fact that we’re not further along in helping patients motivates me and everyone else in this community every day.
When I joined the MDA, it came at a time where there was a clear opportunity to turn the organization around. We often refer to the MDA as the 59-year-old start up put on the map by Jerry Lewis, who through his amazing efforts was able to generate awareness and much needed funds for the neuromuscular community through his annual Telethon. Fast forward to where we are today — despite the incredible work we do, the organization does not have as much recognition in the marketplace as we should for being a leader in scientific and clinical research and neuromuscular disease patient care. I was surprised to uncover this hidden gem of information: After the U.S. government, MDA is in fact the leading funder of neuromuscular research! We’ve invested more than a billion dollars to date and deliver care to more than 50,000 people at 150 multidisciplinary Care Centers at the leading healthcare institutions in the U.S. I knew it was a fantastic organization when I joined, but I never realized how much impact MDA has every day on individuals. That’s been our focus — making sure everyone else understands our story. For example, May is ALS Awareness Month and 48 of our Care Centers are designated ALS Care Centers that impact most people living with ALS. Since its inception, MDA has invested more than $165 million in ALS research, with $20 million having been spent in the last five years. It’s important for people to know our story and be aware of our role in research and care. That’s been a priority for me as a leader.
Can you tell our readers a bit about why you are an authority in the healthcare field?
As an umbrella organization, we are the authority in neuromuscular disease. What’s incredibly exciting is that not only does MDA have a deep understanding and commitment to the top seven neuromuscular diseases out there, like Spinal Muscular Atrophy (SMA) and Duchenne Muscular Dystrophy (DMD), but we are also committed to helping people with all 43 neuromuscular diseases find a cure. We believe that our collaborative and cross functional model in terms of sponsoring research with not only foundations, but universities, top scientists and care centers, will bring the community together to find treatments and cures. There is a lot of excitement coming from the scientific community, specifically around genetic research. At some point with gene discovery, gene editing, CRISPR and all these new techniques, you’re going to see a lot of cross fertilization of the science that will ultimately find cures and new therapies because of this collaboration.
Can you share with our readers about the innovations that you are bringing to and/or see in the healthcare industry? How do you envision that this might disrupt the status quo? Which “pain point” is this trying to address?
Our foundation is built on research, whether that be basic research, early phase research or clinical research, which is used throughout our Care Centers where we have over 2,000 clinicians and more than 70,000 annual patient visits. A year and a half ago, we created a data hub called MOVR that was designed to drive drug discovery and better clinical trial design. MOVR will bring together clinical data, patient outcomes and genetic data from patients with the top seven diseases from the top Care Centers and will combine them into one hub. We’re also talking about expanding it at some point to create a data warehouse. The goal here is that we need to make big data available to ensure 100% collaboration within the community, a place where we can openly share data and different patient profiles so that doctors who are treating patients with rare diseases can find similar patient profiles to the ones they are treating. This information will allow doctors to share best practices and more importantly drive patients into the right clinical trials at the right time so that we can deliver drugs that will benefit the entire patient population and accelerate treatments and cures.
What are your “5 Things I Wish Someone Told Me Before I Started” and why. (Please share a story or example for each.)
Let’s jump to the main focus of our interview. According to this studycited by Newsweek, the US healthcare system is ranked as the worst among high income nations. This seems shocking. Can you share with us 3–5 reasons why you think the US is ranked so poorly?
You are a “healthcare insider”. If you had the power to make a change, can you share 5 changes that need to be made to improve the overall US healthcare system?
Thank you! It’s great to suggest changes, but what specific steps would need to be taken to implement your ideas? What can individuals, corporations, communities and leaders do to help?
Be the leader of the change and walk the walk. Be a disruptor who can seamlessly execute ideas. There is a lot of talk out there about the healthcare system being broken, well let’s get started on the fix. Can we educate people from the get-go on how to maintain the human engine? Can we apply technology every step of the way to help people to keep track of their health? Technology could be completely transformative. Through AI, you can predict the progress of ALS — what if someday, instead of asking Alexa, what’s the weather like today, Alexa says “Hey maybe, it’s time you go to your doctor to get checked out because your voice pattern has changed.”
Communication and education have been undervalued. We need to go back and do a much better job at making the communication clear, exciting and interactive because the communication on how to take that drug is as important as writing the prescription.
What are your favorite books, podcasts, or resources that inspire you to be a better healthcare leader? Can you explain why you like them?
I belong to two powerful women’s organizations, the Healthcare Businesswomen’s Association and WBL — Women Business Leaders of the US Heath Care Industry Foundation. I’m highly active with both groups and was awarded Woman of the Year by HBA in 2005. Both organizations are comprised of powerful women who are all focused on bettering healthcare. It’s great networking where you can learn so much and collaborate with some of the top minds in the industry,
One thing about health is you have to be on it every day. There’s so much to keep up with and it’s a constantly evolving field. Curating a great Twitter feed is an easy way to do that and keep up in real time.
The best book I’ve read lately is the Hit Refresh book by Microsoft’s Satya Nadella where he explained how he is taking Microsoft to the next level and on a constant mission to change the world.