You’ve been a part of building the Radiation
Oncology Institute from its inception. Are you pleased with how the
organization has evolved?
When Drs. Lawrence
and Lawton first convened the work group to determine whether we could
establish a charitable foundation, we envisioned an organization that would:
- Fund studies that would demonstrate the VALUE of radiation oncology;
- Disseminate this information to policy makers and to the public; and
- Establish a long-term research agenda for radiation oncology. We still need to
grow financially; however, between the pilot studies that the ROI Research
Committee has funded and the formal research agenda, we are on our way.
Data to help demonstrate the value of the
profession and treatment is of critical importance to ROI. What are your
thoughts on the importance of data registries? What will happen to the field if
we don’t develop high-quality data?
Of course I am biased here since 15
years ago, Joe Jachinowski and I hoped that aggregation of data from the radiation
therapy electronic medical records) could be an important data source to
identify radiation therapy process and outcome linkages, not just in
prospective studies, but also with large denominators of patients in community
and academic settings. Data mining from mature cardiology and cardiac surgery registries
has demonstrated the relative value of coronary artery bypass grafting and percutaneous
transluminal coronary angioplasty, and there is no reason that we cannot do the
same thing with our interventions. I think it is fair to say that there is both
a real and perhaps a somewhat exaggerated focus on radiation therapy late
effects lately. So if we don’t follow on the same path as the cardiologists and
the thoracic surgeons, the public, the payors and, most importantly, our
patients may look elsewhere for curative management of primary cancers.
The ROI Board of Trustees charged you with
serving as the chair of the National Radiation Oncology Registry (NROR) Executive
Committee. Can you talk about their charge, their subsequent work and your
The ROI Board was extremely
supportive of the need to demonstrate the feasibility of a pilot registry in
prostate cancer. Building an infrastructure from scratch with limited resources
and a staff of 1.5 FTE was a challenge. I am gratified by the many hours of
hard work by a group of around 30 volunteers over the past three years. We did
not anticipate the regulatory challenges from HIPPA, and from the start we
recognized the need to collect longitudinal data while protecting patient
confidentiality. But by focusing our work on quality assurance, we are ready
now to collect data that will pass the muster of our IRBs.
Dr. Lawrence mentions in his message that ROI
transitioned the NROR to ASTRO. What are your thoughts on this transition?
I think none of us believed that
the NROR would remain an ROI project over its entire lifecycle. One needs to
look at the evolution of more mature registries and the associated specialty
foundations as exemplars. The budget of most of these registries is minimally
$1 million per year, and that could never have been maintained from ROI’s
current budget. For the first time, CMS recognizes the necessity for qualified
clinical data registries and is encouraging them as data sources for quality
improvement (QI) and comparative effectiveness studies. ASTRO will develop a
business plan for the registry that will allow members to meet PQRS and MOC requirements.
Contemporaneous changes in the registry regulatory regime (see Dr. Richard
Shilsky’s recent article in the Journal
of Clinical Oncology) will allow the QI data to be mined for the
structure-process-outcomes linkages that we hope the registry would provide. We
will need the resources that ASTRO can bring to bear to allow our ROI-birthed
registry to grow into a generalized data source for all of radiation oncology.
Why have you and your wife made such a generous
investment in the ROI?
That’s easy. Looking back Randi and
I both remember my medical school essay: “Why do you want to be a doctor?” The
idealistic, but naïve answer was, “I would like to have a career with some
utility.” I stumbled into the specialty when I was a third-year medical student
thanks to some amazing residents and attendings at the Harvard Joint Center for
Radiation Therapy, who later became colleagues. I knew that if I pursued this
path, my life would have such utility. How lucky I’ve been to have a job that
helped others and allowed my family to have such a wonderful quality of life.
It is just a matter of paying it forward.
Why should others support ROI?
The only ones who can really support ROI are
the physicians, nurses, therapists and industry representatives who have also
been involved in the field. By looking out five to 10 years, with all our help,
ROI can continue to demonstrate the value of radiation therapy.