SPORE of an idea

Late last week we received formal notification from the National Cancer Institute (NCI) that our long-standing collaboration with the Mayo Clinic known as the “Iowa-Mayo Lymphoma Specialized Program of Research Excellence” or “SPORE” for short, has been refunded for another 5 years. This program has been funded continuously by the NCI for the past 15 years. We now know we will be funded for years 16 through 20. Like most cancer research grants, funding decisions on SPORE grants are based on a robust peer review process and are highly competitive. Needless to say, we were thrilled to hear that our SPORE was viewed positively by our peers.

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Cancer Genetics – it’s complicated – and exciting!

Incredible advances in cancer genetics have revolutionized how we think about cancer. These advances are now being applied to patient care. A brief response to the question “how is our growing knowledge of cancer genetics impacting on cancer research and cancer medicine?” is to say “it’s complicated – and exciting!” That is not a very helpful answer. Here, I will summarize the big picture with the understanding that this brief summary will not even touch on some of the rapidly evolving, nuanced, yet very exciting concepts in cancer genetics.

Let’s start out with a review and discussion of why the genetics revolution in cancer is so important.

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The Journey

Once each year, I take a week off at the end of July and, with 10,000 other crazies, ride my bike across Iowa as part of RAGBRAI.  For those of you who are not familiar with this Iowa tradition, RAGBRAI is the “Register’s Annual Great Bicycle Ride Across Iowa”. RAGBRAI follows a different route across the state each year. It starts on the western edge of the state and finishes on the east with the ceremonial dipping of the front bicycle tire in the Mississippi. RAGBRAI is a rolling folk festival with riders in costumes, bands in many towns, church ladies selling pie, and everything that makes Iowa a great place to live (including a growing number of beer gardens selling Iowa craft beer).

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Retreat, or better yet, Advance

Webster’s dictionary defines the word retreat as “an act or process of withdrawing especially from what is difficult, dangerous, or disagreeable.” That definition only partially fits a current use of the word where a group withdraws from day-to-day activities to focus on broader strategic directions and goals. Indeed, my colleague, friend and partner on the Iowa/Mayo Lymphoma Specialized Program of Research Excellence (SPORE), Dr. Tom Witzig, refuses to use the word “retreat” to describe such gatherings. The intent of the effort is to speed pr­ogress, so he prefers the word “advance”.

Last week, more than 200 faculty, staff and students gathered off site to participate in the Holden Comprehensive Cancer Center Research Retreat. Using Tom’s affirmative-thinking nomenclature, our Cancer Center Research Advance was a great success, and an inspiring day for a number of reasons.

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Those of us who work at academic cancer centers often talk about our three overlapping missions:

  • Research – Successful cancer centers conduct cutting-edge cancer research that helps advance cancer medicine so we can do more to help our patients in the future. To assess research productivity we count major research grants, important publications, and research advances that lead to better patient care.
  • Education – Successful cancer centers educate and train the next generation of cancer researchers and care givers, as well as the public about cancer. To assess education, we look at how competitive we are at attracting the best and brightest students to our education programs, as well as the accomplishments of our former trainees.
  • Clinical care – Successful cancer centers provide quality, state-of-the-art interdisciplinary care including cancer prevention, early detection and therapy. To assess clinical care, we track how well our patients do after they receive therapy from us by looking at survival and quality of life. We also track cancer incidence to evaluate the success of our cancer prevention efforts.

There is an additional component to clinical care that is more difficult to measure – delivery of quality service to our patients. Successful cancer centers work to provide a top-notch patient experience. Cancer centers are very different from settings such as retail where service excellence is a priority. Our patients never want to have to seek our services. They are scared and in unfamiliar surroundings, and they have great anxiety about the future. They should be treated not only for their life-threatening medical condition, but also based on their needs as a person.

How do we measure patient satisfaction and the patient experience in a consistent way? We ask patients about their experience through anonymous surveys distributed by an outside group (the company we work with is called Press Ganey). The results of these patient surveys are shared with us, including both ratings and comments from patients. This allows us to understand and track how well we are doing from the patient’s point of view, and what we can do better.

The surveys have been asking the same questions for a number of years which allows us to track patient satisfaction over time. Patients are asked to rank each question about our service on a simple scale of “very poor”, “poor”, “fair”, “good” and “very good”.

Here are the data on the percent of patients that ranked us at the top level (“very good”) over the past 3 years on three key questions.

“Efforts to include in decisions”HCCC patient satisfaction score graph for "efforts to include in decisions" metric


“Staff worked well together”HCCC patient satisfaction score graph for "staff worked well together" metric


“Likelihood of recommending practice”


It is wonderful to see this steady increase in patient satisfaction over the past three years (essentially all of the patients who did not give us a “very good” gave us a “good”). This is the result of incredible hard work and dedication by our cancer clinic leadership group (Mo Milhem, Hisakazu Hoshi, Zach Pollock, Tina Devery, Geri Quinn, Garen Carpenter and many others) as well as the entire cancer clinic team. They looked carefully at patient comments and suggestions, and used this information to improve the patient experience.

We want our patients to be satisfied with our service, yet we can never be fully satisfied with the service we provide. We recognize there is always room for improvement. We will continue to ask our patients about the areas they feel could be improved further. In recent surveys, these include “information about delays” and “wait time in clinic”. Our team is hard at work on these issues as we strive to provide ever improving service to our patients.

Yes, we must continue to focus on progress in cancer research, education, and cancer care. However, we can’t be satisfied solely with data demonstrating our success in these areas. We must also address the needs the patients themselves identify as important. Only then can we be satisfied that we are doing everything possible to reduce the burden of cancer for those we serve.

Cancer facts and the fight against cancer – Never the Twain shall meet?

Mark Twain spoke about “lies, damn lies, and statistics”.  His point was that statistics can be twisted to argue almost any point (something that we see every day in the current political climate).   Twain also said “Get your facts first, and then you can distort them as much as you please.”  When viewed and used appropriately, facts are a fantastic tool in helping us understand complex information.  In cancer, such facts help us understand complex molecular data as well as data reporting the pain and suffering from cancer.

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Making decisions based on facts we don’t like

Every day at Holden Comprehensive Cancer Center, we cancer specialists and researchers make decisions and recommendations based on facts we don’t like.  A patient’s cancer has recurred.  A treatment is not working.  The patient lacks the gene that would make them eligible for a promising clinical trial.  A highly promising research grant is not funded.  We can’t ignore the bad news.  Instead, we accept it, and do our best despite the bad news.

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Orion or ORIEN – The whole is greater than the parts

I am a bit of an astronomy buff.   When my kids were younger, I had an eight inch reflecting telescope I would set up in the backyard.  My kids and I would invite other families in the neighborhood to look at the night sky.  I recall one evening, we talked about the night sky while I was setting up.  The constellation Orion was particularly beautiful that evening.  We discussed about how the stars that make up Orion’s belt, legs, shoulders and sword, tell us a story we would not understand if we just looked through the telescope at each star separately.   We still wanted to look through the telescope (Orion’s sword was particularly interesting), but looking at the constellation as a whole told us an additional story.  The whole was greater than the parts.

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