The Structure of
Health Care:

How Patient Data Impacts Quality of Care

A chat with Dr. Sam Volchenboum, Assistant Professor of Pediatrics and Director of the Center for Research Informatics at the University of Chicago


At Next IT, we truly believe that when person-centric care reaches all corners of the healthcare ecosystem, we’ll overcome some of the most daunting global health challenges we face. But to get there, the entire healthcare ecosystem needs to work together to create an engaging and seamless experience for the people that need our care.

This is my fourth post in a series of interviews with visionaries and pioneers in the health industry — those whose thinking is opening up possibilities for the future, and who are designing and building the future, today. Today I had the privilege of interviewing Dr. Sam Volchenboum, who not only holds an M.D. in Medicine and a Ph.D in Molecular Biology, but also completed a fellowship in bioinformatics and received a Master’s Degree from MIT.

​Dr. Volchenboum talks about projects in genomics, cancer research, and bioinformatics, and opportunities for studying medicine and biology using computation.

Sam studies ways to harness computers to enable research and foster innovation using large data sets. He directs the development of the International Neuroblastoma Risk Group Database project, which connects international patient data with external information such as genomic data and tissue availability.

Sam will be speaking at Next Edge: Health Experience Summit in Philadelphia this fall, where we will be looking at how we piece together disparate industries and innovations to reimagine people-centric experiences.

Sam and I spoke about his interest in the way different data systems can interoperate and be used to create a much more efficient workflow, to streamline care, improve safety, and enhance physician and patient satisfaction.

What are some of the most compelling insights for improving patient care that you’ve gleaned through your research?

Everyone suspects that non-patient level factors contribute to a patient’s care, but now we’ve shown this through analyzing large amounts of hospital data.

For instance, any doctor or nurse will tell you that during a cardiac arrest (a “code”), lots of resources are diverted to the patient. Doctors run to the room, nurses have to hand off their patients, ICU doctors respond, and anesthesiologists and other physicians all rush to the room. The group may spend the next hour working on the patient. During this time, other patients might experience medical errors that may have negative consequences. Taking a large data set from our Clinical Research Data Warehouse, we’ve actually been able to model and quantify the risk experienced by patients in the hours following a cardiac arrest or ICU transfer.

The more we know about how health-care workers respond to medical emergencies, the better we can allocate resources to prevent problems.

How can doctors and hospitals collect and deploy data more intelligently?

There needs to be better synergy and cooperation between hospital data-collection systems (e.g., the EMR) and data-warehouse capabilities.

Too often, bad data are not fixed at the point of collection, but at the point of entry into the warehouse. This data wrangling is important, but what really needs to happen is for data governance at the hospital to engage the stakeholders and fix the problems at the source.

Everyone needs to see data for the valuable commodity that it is. This comes from both a top-down institutional commitment to data governance and stewardship as well as a grassroots, bottom-up approach of education and training on best practices.

How can we effectively bridge the data divide for continuous patient care between clinics and hospitals?

Empowering patients to be custodians of their own records will help bridge this gap.

We need to help our patients more easily access their records, but we also need to help them better understand what they’re accessing, and we need to be transparent about the methods used to compile and store medical data.

Hospitals and clinics should be able to share records easily — and they can’t. That’s a huge problem. Interoperability standards will help, but I think that ultimately patients will be the best stewards of their own data. It is up to the medical community to educate patients on the meaning of their results and findings. As more and more data become commonly available, it will be increasingly important for the medical community to encourage patients to take responsibility for their own information.

What’s the one problem in the health industry that you aren’t working on but would love someone to address?

I think there’s a lot of room for eliminating inefficiencies in traditional hospital care.

I believe there are ways to revise or replace traditional methods of checking in on hospital patients — such as rounding, taking notes, and making handoffs. Let’s find ways to free up more time for authentic patient-doctor interaction that will result in higher quality care. There are so many potential points of care that we are not using — at home, at work — there’s no reason why we couldn’t use our phones or computers to enable clinician-patient interactions at much bigger scale than we do today.

What technological innovations designed to advance person-centric care are most exciting to you?

I’m most excited about advances in at-home monitoring and testing and technologies that improve on the passive acquisition of health data.

These technologies are essential to the welfare of patients with serious, life-threatening conditions, especially those for whom mobility is a challenge. They also motivate people to invest in their own care and wellness, and that is really important.


About Dr. Volchenboum

Dr. Volchenboum is an expert in pediatric cancers and blood disorders. At the University of Chicago, he is an Associate Professor in the Department of Pediatrics, is the Associate Chief Research Informatics Officer and Director of the Center for Research Informatics and also serves as Associate Director of the Institute for Translational Medicine.

Dr. Volchenboum studies ways to harness computers to enable research and foster innovation using large data sets. He directs the development of the International Neuroblastoma Risk Group Database project, which connects international patient data with external information such as genomic data and tissue availability.

Dr. Volchenboum attended Mayo Medical School and completed his residency at Cincinnati Children’s Hospital. After a pediatric hematology/oncology fellowship at Children’s Hospital, Boston and the Dana-Farber Cancer Institute he completed a fellowship in bioinformatics and received his Master’s Degree at MIT. He has been a faculty member at University of Chicago since 2007.


Want to help push forward the edge of person-centric care?

Join Dr. Volchenboum, Dr. Gulati, Kate Eversole, Dr. Damania and other leaders at the Next Edge: Health Experience Summit this fall in Philadelphia to discuss real world solutions and learn ways to create engaging, inclusive and seamless experiences for the people that need care most.

Reserve your seat today at www.nextedgesummit.com. Join the conversation by following @NextEdgeSummit and using the hashtag #HXsummit.

Show your support

Clapping shows how much you appreciated Dr. Thomas Morrow’s story.