Why Medical Science is Failing Patients Like Me — And What We Can Do About It

Next week will mark my ten year anniversary since getting diagnosed with Parkinson’s disease. Throughout this time, many well-meaning people have told me, “now is the best time ever to be diagnosed with PD.” What they mean, of course, is that there are currently more treatment options than ever before, and medical progress will only continue to improve from here.

Unfortunately, these reassurances do nothing to help in my daily struggles with this condition. They don’t relieve my balled-up dystonic foot that often makes walking painful, they don’t help me sit still during prolonged bouts of dyskinesia, nor do they make it any easier to drag the right side of my body around like a limp corpse to the bathroom so I can pee again, nor do they help  me enunciate better during my gradually more slurred talks I give on the state of neurodegenerative science at biotech centers around the world.

In the time since my diagnosis I’ve gained an intimate understanding of the Parkinson’s field and have gotten the opportunity to speak with many of the top minds in it. I’ve met everyone from research scientists, lab managers, biotech executives, and hedge-fund managers, each using the tools that they have to try and push the field forward. While their efforts are surely commendable, I feel that the field has collectively lost sight of why they originally set out to work in the medical industry: that is, to help patients like me live better tomorrow than we can today.

As most followers of my blog will know, I’ve been on a mission to remedy some of these issues by creating patient advisory boards at pharma companies, clinics, and – most successfully – at biotech startups like Rune Labs. I’ve also been traveling across the globe, delivering talks at biomedical centers and academic institutions about the personal challenges I’ve encountered as a patient, and some of the systemic shortcomings that plague healthcare and biomedical industries.

Yet, while these efforts have been personally rewarding, there is still one overarching problem that remains unaddressed: how medical science generates knowledge in the first place.

Science is often idealized as a purely neutral and objective process, but the reality is that there are many pervasive influences and incentives that can distort the scientific method — many of which are contributing to the ongoing replication crisis.

Science can be thought of as an intricate dance between theories about the nature of truth, claims about how to support those truths, and publications that demonstrate those truths. When science is done well, we can trust all of these individual parts in order to build on the whole. This is how scientists make new discoveries, as well as how new drugs and treatments are made.

Unfortunately, one of the big issues right now is that we can trust less and less of what is published in the scientific record. For example, recent studies have shown that as much as 50% of all pre-clinical findings cannot be replicated, and that half of all clinical failures — such as failed drug development projects and clinical trials — can be attributed to underlying faults in preclinical and translational science.

In other words, the scientific foundations that medical researchers have to build on simply are not reliable enough any more — and this is making it harder and harder to create new effective therapies.

Translating academic science into new medical treatments is a hard problem, and lack of reproducibility and intellectual rigor makes it even harder — or sometimes even impossible.

People have come up with many attempted explanations for this situation. Some blame this state of affairs on the inherent complexity of biology; other times, it is attributed to occasional instances of outright scientific fraud. But what I and others are slowly realizing is that there is a lot more to this story than most people realize: the root cause is a progressive, systematic decline in scientific rigor across the board. And ultimately, this means that discovery slows down, and patients like me do not gain access to effective therapies.

To make things worse, the minority of people who recognize this crisis often downplay its scale and impact, or believe that it can simply be overcome by collecting more data (“business as usual”). And among those of us who do acknowledge the problem, there is a general lack of certainty or clear strategies about how to actually solve it.

So, in May of this year, I co-founded VeracityBio inc. to tackle this problem head-on. This project began when I met Samuel Burke at a Parkinson’s conference almost 5 years ago, and later Matt Carland: two PhDs who, like me, have experienced many of the difficulties and frustrations that stem from the ongoing lack of rigor in the scientific world, and who have made it their mission to find a solution to this problem. (You can read more about our “origin story” on our website, here.)

Together, our team has spent the last several months developing a platform that allows scientists and analysts to uncover critical flaws in the scientific chain of evidence, at scale.

This means two things. Not only can we make science work better and faster — i.e. by helping scientific teams avoid wasting time researching “dead ends” — but we can also help them to identify the “diamonds in the rough”, by discovering better drug targets and disease mechanisms to develop more effective treatments.

We want to help bring rigor back to science, and make it reliable again. We believe that doing so can not only help save huge amounts of money and time for developing new drugs and therapies, but also — and most importantly of all — it could have a world-changing impact on the lives of so many patients like me patiently waiting for medical science to deliver on its long-promised breakthroughs.

With several months of initial milestones behind us, we’ve now reached the point that many young startups do, where we need to look more broadly for additional resources so that we can continue to bring this project to fruition. So, dear reader, if you know investors, stakeholders, or potential customers/users who want to tackle this issue and change biomedical science forever, please reach out at ben(at)veracity(dot)bio (we can also share our prototype and additional materials on this venture for those who request).

To follow us in this journey, sign up at this link here.

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