This is the seventh in a series of profiles of people driving some of the most promising consortia in medical research. It is part of FasterCures’ Consortia-pedia project – which dissects the research-by-collaboration model and aims to establish a framework that can be applied broadly.
“Digital healthcare holds tremendous promise and…we can make our health care system more personalized and proactive and thus better for patients,” said House Energy and Commerce Committee Chairman, Congressman Fred Upton (R-MI) in remarks to kick off a roundtable discussion help June 21st focused on how new technology and data can turn our healthcare system into a predictive and integrated care continuum.
WASHINGTON, DC—(Marketwired - Jun 26, 2014) - A study published in the June 25 issue of Science Translational Medicine found that in the past decade, there has been a rapid emergence of consortia in biomedical research. The study, Consortium Sandbox, noted that this trend is in response to the growing need for broad-based partnerships to address shared scientific, regulatory, or reimbursement challenges.
Mark Lim, associate director of medical innovation at FasterCures and author of the study analyzed the characteristics of 369 consortia from around the world and found that these efforts provide a safe harbor for participants by guaranteeing transparency and equitable access to any outputs. Lim defines consortium efforts as public-private partnerships built on a framework that provides neutral and temporary collaborative environments for several, often times competing, organizations.
We all know that that our clinical trials system is not working as it is. A strong body of evidence suggests that the one test, one drug model is inefficient and expensive; and that a very low percentage of patients are even being made aware of, let alone participating in, clinical trials. When you consider the challenges of running trials for increasingly smaller, more targeted populations – as is the case with personalized medicines – the obstacles to bringing new therapies to patients who need them can seem overwhelming.
The decisions we make today will have implications long into the future. Now is the time to lean in and ensure everyone understands the NIH’s value proposition and relevance to patients and the economy, because it already takes too long to get from an idea to a treatment. In the U.S., every 68 seconds, someone develops Alzheimer’s disease. Every 24 seconds, someone is diagnosed with cancer. Every 18 seconds, someone is diagnosed with diabetes. Patients’ lives are literally on the line. At FasterCures, we often say that time equals lives. We cannot let the possibility of a cure sit in a cupboard instead of pursuing its full potential to benefit patients, families, and communities.
"In many senses, Geisinger Health System, Kaiser Permanente, and the Mayo Clinic are the grandparents of health IT and its use in clinical and research practice. All three systems have been at the leading edge of EHR adoption and, early on, found ways to integrate clinical and research use of electronic data. Each has the benefit of having a “captive patient population” or closed system in which loyalty can be built, trust established, and concerns about privacy an confidentiality averted."
This is the sixth in a series of profiles of people driving some of the most promising consortia in medical research. It is part of FasterCures’ Consortia-pedia project – which dissects the research-by-collaboration model and aims to establish a framework that can be applied broadly.
by Kim McCleary, Director of Strategic Initiatives, FasterCures
Nearly every decision in health care R&D and delivery distills down to weighing benefits and risks, evidence and uncertainties. These decisions are made at the bedside and in the board room. The 2012 Food and Drug Administration Safety and Innovation Act (FDASIA) included several new provisions related to benefit-risk assessment. The “breakthrough” designation that promises to accelerate therapy development for areas of unmet medical need recognizes that patients with serious and/or life-threatening conditions are willing to tolerate greater risk, in terms of accepting incomplete information about a therapy and its potential side effects and adverse events, in hopes of deriving benefits that extend life or improve its quality.
Q:What was the motivation for the recent merger of the Epilepsy Foundation with the Epilepsy Therapy Project (ETP)?
Our motivation in coming together was to more effectively leverage our resources and gain critical scale and energy to accelerate new therapies and improve the lives of people with epilepsy. By combining the two leading websites for people with epilepsy, we saw an opportunity to build together a new unified site with improved functionality and content and save resources. Similarly, we saw an opportunity to build a stronger national brand and awareness of our mission working together as one organization.
Supporters including the Milken Family Foundation and outside observers including the Institute of Medicine encouraged us down this path. And we were fortunate to be able to build on a decade long partnership we had built around the funding of new therapies in a timeframe that matters for people living with epilepsy. Personally, we and our families have lived with epilepsy for many years and understand all to well the consequences of uncontrolled seizures and side-effects. We were driven to increase our efficiency and impact and recognized that a merger could allow us to move faster towards our goals.
We have all followed a vehicle on the road with a “How’s my driving?” sticker and a phone number to call. I’ve often wondered whether anyone ever calls those numbers to report an excellent driver—probably not. The company is likely to get a skewed sample of reports on its drivers—only hearing about those who cut someone off or gestured impolitely, yet these campaigns are a request for feedback, knowing it will be imperfect and with no rules for what constitutes quality. If the driver simply gets to his intended location, is that a sufficient indicator of quality driving? Does it matter how long it takes him to get there? Does it matter whether he stops along the way to help another driver? Should he be assessed on whether he uses the least amount of fuel? Is safety the only measure of quality? And how would we, in the following car, know the answer to any of those questions? Thus, the answer to “How’s my driving?” will vary depending on who is answering and what they consider to be important.