Bench-to-Bedside Research on New Technologies and Treatments 

Optimal uptake of new medical technologies and innovations will occur only if their value is recognized by payers that opt to cover them.  Period

While promising, many new innovations are unproven, expensive, ineffective and wasteful; few have been adequately vetted (especially for use by ERISA plans).   While this research is clearly needed it is best conducted by Health Economics Outcomes Researchers and Health Technology Assessment experts using real-world-evidence and focused on clinical effectiveness and utility.  This type of bench-to-bedside "translational research" needs to clearly demonstrate how the adoption of a new technology or innovation will impact health care costs, service utilization, value (vs. the standard of care), medical outcomes, quality of care, patient satisfaction, etc.   It can only be conducted by an unbiased, transparent third-party entity with external oversight.

The Research Consortium is a secure, regulatory-compliant independent research facility purpose-built to leverage new technology and science, common sense and access to millions of self-funded plan participants to offer valuable services to payors, plan participants and medical researchers.   We will have unique access to clinical outcomes, genomic with medical claims and cost data to use in pragmatic studies designed with a payor focus.  Our research will be conducted by subject-specific teams of researchers, scientists, doctors and experts associated with some of the nation’s leading universities, medical foundations and research institutes.   Our independent oversight board will ensure that our researchers have no interest in study results.

Plan Participants Own, Control and Benefit from Their Health Data

Privacy is an evolving concept for which there is no universal agreement.  It is difficult to ensure and enforce, especially as it relates to data.  Each day, often unwittingly, we create “data”, even before it’s captured or measured (e.g., web-connected cars track where we go, the route taken and how long we stay at our destinations).  This data is valuable and is often captured and sold without our knowledge or consent…for $150+ billion/year.  Indeed, unbeknown to most, data belongs not to its originator but to its creator, e.g., healthcare data (EMRs, Rx, radiology and lab) belongs not to the patient but to the provider who created it.  Moreover, patients have little control over how their data is used and though the healthcare data market is now nearly $70 billion annually… few patients see any of this money.   This is all changing however owing to new perspectives on data ownership and data privacy.

A person who owns something can normally control if, how and when it is used, shared, donated or sold as it is their property to do what they wish.  Property rights that are well established, universally understood and enforceable ensure this…unlike our vague notions of privacy.  These rights have been extended to intangible items such as intellectual property, patents, copyrights, etc. and a movement is on to extend property rights to facilitate “personal data ownership” as a means to achieve “data privacy” and establish a fair market value for personal data, like any other asset.  Individuals, as they gain control over their data, will have a seat at the negotiating table (on equal footing) with data buyers with whom they may wish to establish relations.  



Whereas in the past individuals had little financial incentive to share, lease or sell their data, today they do. This is especially so as it relates to healthcare data as it is in great demand by pharmaceutical/medical device companies and medical researchers; who need it to better understand disease and to create new, more effective and less costly medications, treatments, etc.   Collecting more comprehensive, higher quality and verifiable healthcare data, and sharing it with researchers, will accelerate advances in medicine that benefit everyone.  This serves both parties because as more healthcare data is shared by individuals with researchers, data sellers will not only reap more financial benefits but gain access to leading-edge treatments and providers.

Today, its easy for individuals to create, securely store and share their health data with their caregivers and doctors and/or sell it anonymously to researchers, often for significant sums.  Having permissioned access to payor claims systems, the Research Consortium is unique in its ability to create personal health datasets that consist of medical/Rx claim data, EMR data; radiology, lab and even genetic data.  These “highly enriched” personal health datasets are not otherwise available in the market and are of considerable value, especially for those patients having a rare disease. 

Clinical-Research-as-a-Care-Options to Augment Routine Care

Operating as if it has been in an unrelated industry, clinical medical research has been largely disconnected from the routine medical care continuum; so much so that for decades most doctors have been unaware of available research opportunities.  As a result, few doctors offer their patients an opportunity to learn about either clinical trials or clinical-research-as-a-care-option programs that would not only benefit them, but also advance medical research.

A clinical-research-as-a-care-option program enables the coordinated augmentation of a patient’s routine health care with expert care obtained by participating in clinical research.  Today, participating in clinical research is seen as a care option to be made available alongside traditional care as the value of integrating clinical research into a patient’s overall continuum of care can be enormous; especially for those having chronic or rare diseases.

Participating in a clinical-research-as-a-care-option program focuses more attention on a patient’s illness and provides the potential to receive no-cost, leading-edge care and attention from pioneering researchers and clinical providers.  A fundamental principle of clinical-research-as-a-care-option programs is the preservation of the doctor-patient relationship by expanding the traditional clinical research setting to include local medical practices.  Bringing clinical research expertise, knowledge and operational know-how to doctors’ offices both helps augment routine clinical care and engages patients and physicians to participate in a new type of clinical research, for their benefit and to advance medicine.

The Research Consortium monitors clinical research opportunities and matches patients to clinical-research-as-a-care-option opportunities that are appropriate to their illness, condition or disease.   We are uniquely able to do this as we have permissioned access to millions of Plan Participants of TPA-administered self-funded plans and the medical data needed to identify patients for which clinical-research-as-a-care-options opportunities exist.

Genetic / Genomic Testing to Inform and Guide Care

Appreciating their great value, pharmaceutical, academic and foundational researchers have added genetic/genomic testing to their study regimens. These tests explore a person’s DNA to identify changes in chromosomes, genes, or proteins -- information used by doctors for diagnostic, prognostic and predictive purposes.  Testing can confirm or rule out vulnerabilities to inherited diseases; or help determine a person's chance of developing or passing on a genetic disorder. Pharmacogenomic (PGx) tests determine the influence of genetic variation on drug response to determine which and what dosage would be the safest and most beneficial given the person’s unique DNA (to side-step the common trial-and-error drug selection process).  Moreover, the advent and widespread adoption of next generation sequencing (NGS) enables clinicians to investigate a person (or tumor's) unique molecular profile (DNA), thereby enabling them to more precisely identify drugs and drug combinations that are likely to work, or not work. 

Perfectly healthy people may also benefit from access to medically actionable genomic data to learn more about what they can do to remain healthy or to become aware of what’s to come for them health-wise.  In this way, they can take action to prevent certain illnesses or diseases for which they might be more susceptible (from simply wearing more sun-screen to undergoing pre-emptive surgery).