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Promise and Progress - To the Point with Robert Arceci, Director of Pediatric Oncology

Faces of Childhood Cancer

To the Point with Robert Arceci, Director of Pediatric Oncology

Date: June 1, 2004

In this candid conversation, no topic was off limits. From improving facilities to patient safety to access to experimental therapies, Arceci provides an inside look at changes in pediatric oncology.

What’s on the horizon for pediatric oncology?

In five to six years, we’ll have brand new facilities in the Children’s and Women’s Hospital that will be built behind the Weinberg Building. This will be wonderful, but we can’t wait that long to update and expand our pediatric oncology inpatient unit and outpatient clinic.  To bridge the gap, the Children's Cancer Foundation has donated funds to allow us to renovate our current space in the Children's Center and an 8,000-square-foot space in the Outpatient Center.

Often we think of temporary fixes as being mediocre. Is that the case here?

No, we’re talking state-of-the-art. It will have 20 inpatient rooms, twice as many as we have now. They will all be private rooms with the most up-to-date technologies, including real-time acquisition of patient information, electronic patient records, and a clinical trials system that links the protocol to the patient’s records to alert the medical team to potential red flags or treatment contraindications.

That raises the issue of safety. You can’t pick up a newspaper without reading about medical mistakes, and Johns Hopkins has not been immune. What are you doing to ensure patient safety in pediatric oncology?

Our goal is to create the safest possible children’s cancer center while giving the best care and advancing standard therapy. One of the most significant advances we’ve made is a computerized and automated chemotherapy system. There is only one other like it in the entire country. Chemotherapy orders for patients can only be written through this system. The system, not people, calculates drug doses and double-checks the doses against the patient’s height and weight. Intrinsic to the system are several checkpoints. Our system is set up to anticipate errors and to check and recheck every calculation.

A computer system is only as good as the data entered into it. How do you ensure accuracy on that end?

Two pharmacists, two nurses and two physicians have to agree independently on every chemotherapy order. Anyone anywhere along the way can stop the train. If a patient, parent, secretary, physician, anyone has a question or concern, everything stops until it is reconciled. If a secretary is entering a doctor’s note into the system, and it doesn’t make sense or records are missing, that person can stop the process until the issue is resolved. The climate of not questioning the doctor is gone. It does not have a place here.

This new system is Web-based, so it operates in real time. We have developed a medical records team and hired new staff to make sure that all data gets put into the records, which should be pristine. Everything is inter-related with a series of checks and balances. If we have a patient in a clinical trial, and the laboratory researcher has a new finding, this information will be entered into the system, so that clinicians have all of the relevant information they need to make treatment decisions.

Believe me, I wake up at night thinking of ways to make things safer. Our pediatric oncology system should be an independent, self-correcting and anticipatory system. Perfect is an impossibility, but I think it needs to come as close as we can get.

With the increased emphasis on patient safety, do you think clinicians will be more conservative about exploring novel therapies?

No. In fact, it should have the opposite effect. With more confidence in safety mechanisms that have been put in place, we can proceed more confidently with clinical research. In the past, safety concerns have prevented pediatric cancer patients from gaining access to experimental new therapies.

Adults are the first to have access to new drugs. We think if the biological target, for instance a cancer-related gene, is the same in adult and pediatric patients, then the child should have the same opportunity to get the drug. I understand that the fear of hurting a child is part of the rationale behind limiting access to trials, but I do not believe we should restrict children’s access to new therapies if we can offer them safely.

We are working collaboratively with Kimmel Cancer Center researchers and clinicians on the adult units in co-developing clinical trials that can be offered simultaneously to adult and pediatric patients. We also are working with our colleagues at other cancer centers through POETIC (Pediatric Oncology Therapeutics Investigation Consortium). Our goal is to initiate biologically targeted trials that serve as a feeder mechanism to other cooperative groups, such as the Children’s Oncology Group. POETIC’s first trial of a compound called 17-AAG has already begun and is being studied for its ability to destabilize abnormal growth-promoting genes, or oncoproteins, and halt leukemia and solid tumor growth.

So what’s the bottom line in terms of progress and patient safety?

At Johns Hopkins we’re not going to be satisfied with status quo and neither are our patients. But I don’t believe patient safety and research progress are mutually exclusive. I believe we can do both well.