Healthcare data matters to me. And him.

Just as the pandemic shined a bright light on remote learning tools, it is starting to bring the ways in which healthcare and life sciences organizations create, cleanse, and allow appropriate sharing of data out of the shadows.

On a winter COVID-walk, listening to an episode of Freakonomics, I realized that my current work matters deeply to really smart and important healthcare and life science leaders. The podcast drove home to me that the speed, accuracy, and breadth of ways in which we appropriately curate, share, and access medical data of all kinds will improve our health outcomes dramatically.

The podcast I mentioned above mainly concerns cancer, but its points are easily generalized to other health and pharma challenges. Freakonomics host Stephen Dubner asked former FDA commissioner Peggy Hamburg, “if she thought that the mechanisms developed and the alliances built in?pursuit of a Covid-19 vaccine might prove beneficial for the treatment of other diseases.” She responded (bold below is mine):

?“I absolutely do. […] Covid-19, I think, marks a hugely important moment in time when the scientific research community came together across disciplines and sectors and borders in order to collaborate. And I hope we won’t lose that spirit of collaboration, because I think it is absolutely essential. But it requires companies to work together in ways that historically they haven’t always been comfortable.”

?In that same episode, Ned Sharpless, the director of the National Cancer Institute (NCI) said:

?“I think the average American citizen would be surprised by the level of fragmentation of medical data. That it’s not held by any central repository and easily searchable. The NCI has long been frustrated by our inability to really see what’s going on and has developed a number of data sets that try and aggregate the national cancer story to make it more understandable.”

?[…] SEER is a registry of who gets cancer and who dies of cancer. But you can link it to Medicare, which has claims data about how they got treated, but still you would like more information than that. You’d really like to be able to look at the medical records of patients and understand, you know, what therapies had they had before? And what risk factors do they have for cancer? And to get that out of the medical record, that turns out to be complicated.

?Complicated indeed. Bringing together data across organizations is a technical issue. A security issue. A privacy issue. An ethics challenge. A business revenue challenge. A company culture issue. A human issue. The myriad questions that need to be addressed by appropriately breaking data silos include:

• How can a life sciences company better emphasize diversity in drug trials?
• How can a state health system trying to accurately and quickly understand if there are adequate providers available for populations in various regions of their state?
• How can a family with a medically fragile child trying to get a simplified and accurate record of a bill?
• How can a fledgling pharmaceutical company get de-identified patient data to better understand an issue that will help them design a medical breakthrough?
• Why does a father who doesn’t believe the statement “your child is only one of ten in the world who has this issue” have to accept that as an answer when he knows via social media and common sense that it isn’t true?

The area of tech that I believe is about to explode is called Extended Master Data Management (E-MDM).?MDM has been around for years, but I believe the new and innovative ways in which companies like mine, Gaine, are approaching these data mastering and silo problems will change our world.

Stodgy??Not when you realize that in the next year or so supplying tools to healthcare and life sciences firms to build unique and secure approaches to health data will change our world.?Just as the pandemic was an accelerant for the Ed tech industry, the Freakonomics podcast showed me that some really influential people understand the problem of data silos in healthcare and are willing to work to change them.?For all our sakes.

Gary Dietz is the principal at www.dadsofdisability.com