Myers: One way to better define the position of the CIO or the CDO is to embrace what Richie Etwaru calls â€œcruciality.â€ Itâ€™s all about centering the function around whatâ€™s truly important to the organization. Katherine Wilemon is the founder and leads the FH Foundation, a research and patient advocacy group for a deadly, little known condition called familial hypercholesterolemia (FH).
An estimated 1.3 million people in the US suffer from this condition, which is genetic in origin, is readily diagnosable and treatable, yet if left untreated can lead to a 50/50 chance of suffering a heart attack by age 50. We estimate that 90 to 99% of patients with the condition are unaware they have it, so the goal of our FH Foundation is get individuals as young as 10 signed up for a preventive screening and treatment that manages this risk.
Led by Katherineâ€™s vision, we created a machine learning algorithm to identify the number of probable FH individuals (those with medical and insurance records consistent with FH) at the provider level to encourage early screening and diagnosis and initiate preventive treatment. I serve as the Foundationâ€™s chief technology officer (CTO), and I found that what helped us achieve this goal was actually the lack of any existing analytics infrastructure that might have seen this initiative as a disruptive threat.
Itâ€™s ironic: we had no technology infrastructure in place and yet we secured our objective earlier and identified probable FH patients than had we had legacy IT systems to deal with. It is something large organizations should take to heart. In trying something new, you have to account for the burden of replacing whatâ€™s already in place. I think thatâ€™s an important part of the CIO role that we have not discussed.”