James M. Berklan

Since long before many people had ever heard of the word pandemic, let alone knew what it meant, there have been certain affiliations plaguing the elderly in a disproportionate way.

This is partly because older bodies simply are more prone to certain declining conditions. But it’s also due to the fact that research and treatment have lagged. In brief, a lack of useful data has blocked the path to better treatments and care.

A bulldozer that could clear the way may be warming its engines. The data revolution, which has picked up speed in long-term care recently, may be poised to change matters.

Lessening the effects of Alzheimer’s disease, diabetes and Parkinson’s disease, as well as conditions like obesity, could save millions of health system dollars, not to mention millions of patients’ pain points.

But you can’t do it without data. That’s why anonymized electronic record information from 1.3 million patients will come in so handy. Long-term care electronic records giant PointClickCare is offering just that. It’s providing de-identified patient data for the Discovery Viral Infection and Respiratory Illness Universal Study (VIRUS) COVID-19 Registry.

VIRUS is a cross-sectional, observational study and registry of all eligible adult and pediatric patients who are admitted to a hospital. That’s according to an official description that soon may have to reflect greatever senior care involvement.

That is the key: Hospitals have had groups like Cerner and Epic, and the ambulatory care crowd has had AllScripts, gathering expansive data sets for the acute-care crowd “for a long time.” That’s the word from Jeff Wessinger, the older, retired brother of Dave and Mike, the guys who sit atop the masthead at PCC. Jeff enjoyed a previous life in a pharmacy-related business, which led him to realize there’s a significant gap in longitudinal research data for long-term care patients.

Jeff actually started working with PCC’s data sets in 2019, to use in conjunction with VIRUS to focus on longstanding conditions such as the ones named above. Then along came a pandemic. With seniors squarely in its crosshairs, it became a perfect, more urgent target to focus on.

Earlier this month, PCC launched its Lighthouse initiative. It will provide de‐identified data on COVID‐19 diagnosed patients, including demographics, vitals, medications and health‐related outcomes to help better understand their health and outcomes post‐ICU.

“The COVID-19 pandemic has introduced unprecedented challenges to healthcare systems worldwide, but we live in a more connected world and we must work together and learn from each other’s experiences to help reduce the severity of the impact,” said Rahul Kashyap, M.B.B.S., MBA, a Mayo Clinic researcher and principal investigator of the VIRUS COVID-19 Registry, in a statement. His co-principal investigators are Vishakha Kumar, M.D., MBA of SCCM and Allen J. Walkey, M.D., MSc of Boston University. 

“This dissemination of aggregated knowledge shared in a single database in a timely manner will be essential for comparative effectiveness studies. It will be a game-changer,” Kashyap added.

Wessinger said that Lighthouse is bringing its eldercare research capabilities to three groups in particular: The Society for Critical Care Management; the Centers for Disease Control and Prevention; and the American Health Care Association. The hope is to foster better treatments, therapies and drug development. Lowering infection and mortality rates, of course, are prominent hopes.

COVID-related research is a “straight giveback,” Jeff told me. While for-profit or pharma types are charged a fee for the data, if someone’s doing COVID-related research, they get it free.

Visions of the scene in “Miracle on 34th Street,” where the Macy’s Santa Claus charitably refers parents to patronize Gimbels — all for the greater good — come to mind.

“There is a big gap here that hasn’t been addressed in the market,” Wessinger said, referring to data availability and application. The data being put in play, he added is “a gold mine for diabetes, dementia and Alzheimer’s research.”

In the end, the overarching pursuit is “about enhancing quality of life and lowering costs,” he added.

Sounds like numbers that add up to me.

Follow McKnight’s Long-Term Care News Executive Editor James M. Berklan @JimBerklan.