Post on 20-Oct-2020
The Radiation Oncology Data Sharing Landscape … Registries, Clinical Trials,
Data Warehouses
Colleen Fox, PhD, DABR – Data Sharing Basics
Sarah Quirk, PhD, MCCPM – Clinical trial data sharing
Scott Hadley, PhD – Data sharing standards, IHE-RO
Data Reporting Needs and Cancer RegistriesThe data sharing landscape
Colleen Fox, PhD, DABR
Dartmouth-Hitchcock Norris Cotton Cancer Center, Lebanon, NH
Geisel School of Medicine, Hanover, NH
Colleen.J.Fox@Hitchcock.ORG
Disclosures
• I have not received funding related to the topics discussed in this talk.
• My first hand experience is primarily limited to Varian and Epic. As a result most examples will be in software from these vendors. This talk is not an endorsement of any of the mentioned tools or applications.
Objectives
1. Think about who should be using radiation oncology data and what data they need.
2. Question if the dissemination of this data is accurate and efficient.
3. Get involved and make improvements (inside and outside Radiation Oncology)
DATA!
AI, Deep
LearningScripting
Automated
PlanningScripted
Chart
Checks
Decision
Support
Tools
Outcomes
Based
Medicine
Database
Queries
Universal
Health
Records
Trials
Cost
Efficient
Healthcare
Quality
Measures
Naming /
Ontology
Consistent
use of data
elements
Database
Structure
GUI Human
FactorsWorkflow
Why Share Data
• Coordination of care
• Previous treatments
• Accreditation
• Technique assessment / standards
development
• Quality improvement / incident learning
• Equipment and staffing decisions
• Quality reporting programs
• Billing
• Cancer registries
• Research
1. High quality patient care
2. Funding
3. Advancement of the field
Minimum Data Elements
Prescribed Dose-level Elements
Anatomic site
Total dose planned
Total dose delivered
James A. Hayman, Andre Dekker, Mary Feng, Sameer R. Keole, Todd R. McNutt, Mitchell
Machtay, Neil E. Martin, Charles S. Mayo, Todd Pawlicki, Benjamin D. Smith, Randi Kudner,
Samantha Dawes, James B. Yu, Minimum Data Elements for Radiation Oncology: An
American Society for Radiation Oncology Consensus Paper, Practical Radiation Oncology,
Volume 9, Issue 6, 2019, Pages 395-401, ISSN 1879-8500
Treatment Course Data Elements
Diagnosis
Modality
Technique
# of fractions planned
# of fractions delivered
Start date of treatment
End date of treatment
Basic Data SharingWho needs Rad. Onc. Data?
• Coordination of care –Providers outside Radiation Oncology
• Cancer registries – Local registrars
• Previous treatments –Providers at another institution
• Billing
• Quality improvement / incident learning
• Quality reporting programs
• Equipment and staffing decisions
• Technique assessment / standards development
• Accreditation
• Research
Synoptic Radiation Treatment Summary
Radiation course summary
Treatment indication {free or structured text}
Course start date {YYYY-MM-DD}
Course end date {YYYY-MM-DD}
Concurrent systemic
treatment?
{Yes/No} {optional
free text comments}
RT course
discontinued early?
{Yes/No} {optional
free text comments}
Patient experience {free or structured text}
Follow-up plan {free or structured text}
Comment {optional free text}
John P. Christodouleas, Nathan Anderson, Peter Gabriel, Rick Greene, Carol Hahn, Susanne Kessler, Charles S. Mayo, Todd McNutt,
Lawrence N. Shulman, Benjamin D. Smith, Jeff West, Ted Williamson, A Multidisciplinary Consensus Recommendation
on a Synoptic Radiation Treatment Summary: A Commission on Cancer Workgroup Report, Practical Radiation Oncology, 2020, In Press, Accessed online 24 January 2020, ISSN 1879-8500, https://doi.org/10.1016/j.prro.2020.01.002.
Anatomic target summary
Anatomic target ModalityCumulative dose
(cGy)
Delivered
prescriptions
{free or structured
text}
{free or structured
text}{#} {#}
[+]
Comment {optional free text}
Delivered prescription summary
1 2 3
Start day (date (session)) {YYYY-MM-DD} ({#})
Dose per Fx (cGy) {#}
No. of Fx {#}
Total dose (cGy) {#}
Technique {free or structured text}
[+]
Comment {optional free text}
Synoptic Radiation Treatment Summary
John P. Christodouleas, Nathan Anderson, Peter Gabriel, Rick Greene, Carol Hahn, Susanne Kessler, Charles S. Mayo, Todd McNutt,
Lawrence N. Shulman, Benjamin D. Smith, Jeff West, Ted Williamson, A Multidisciplinary Consensus Recommendation
on a Synoptic Radiation Treatment Summary: A Commission on Cancer Workgroup Report, Practical Radiation Oncology, 2020, In Press, Accessed online 24 January 2020, ISSN 1879-8500, https://doi.org/10.1016/j.prro.2020.01.002.
How to Share the Treatment Summary1. Store in radiation oncology system as a document, possibly hand copy to
hospital EMR• Not visible to all, manual copies and data entry are error prone
2. Share the document through a document interface• Visible but does not result in discrete data elements in the hospital EMR
3. Share the data elements with the hospital EMR with a software data link• Discrete data, but error prone and limited. Vendors are working with IHE-RO to
improve this
4. Set up a data warehouse that uses scripted queries to combine minimum data elements from the various hospital EMRs and other databases. • Highly flexible but needs resources to develop and maintain.
Russo GA. When Electronic Health Records (EHRs) Talk, Everyone Can Win: Our
Experience Creating a Software Link Between Hospital and Radiation Oncology
EHRs. Int J Radiat Oncol Biol Phys. 2016;94(1):206-207. doi:10.1016/j.ijrobp.2015.09.012
Cancer Registries
• Monitor cancer trends over time.
• Show cancer patterns in various populations and identify high-risk groups.
• Guide planning and evaluation of cancer control programs.
• Help set priorities for allocating health resources.
• Advance clinical, epidemiologic, and health services research.
• Death data
• Software for data collection and review
https://www.cdc.gov/cancer/npcr/about.htm
Cancer Registries• National Program of Cancer Registries (NPCR)
• Established by the U.S. Congress in 1992, administered by the CDC
• Collect data on cancer occurrence, type of initial treatment and outcomes
• NPCR funds registries in 46 states, the District of Columbia, and 3 territories• https://www.cdc.gov/cancer/npcr/index.htm
• National Cancer Institute’s (NCI’s) Surveillance, Epidemiology, and End Results (SEER) Program• 12 U.S. states, 4 metropolitan areas, plus Native American populations
• https://seer.cancer.gov/
• National Cancer Database (NCDB)• Jointly sponsored by the American College of Surgeons and the American Cancer Society
• Clinical oncology database sourced from hospital registry data that are collected in more than 1,500 Commission on Cancer (CoC)-accredited facilities.
• https://www.facs.org/quality-programs/cancer/ncdb
• Canadian Cancer Registry (CCR)• 13 Canadian provincial and territorial cancer registries collaborating with Statistics Canada
• https://www23.statcan.gc.ca/imdb/p2SV.pl?Function=getSurvey&Id=1215604
https://www.cdc.gov/cancer/npcr/index.htmhttps://seer.cancer.gov/https://www.facs.org/quality-programs/cancer/ncdbhttps://www23.statcan.gc.ca/imdb/p2SV.pl?Function=getSurvey&Id=1215604
Cancer Registries – Rad. Onc. Elements
Treatment Course / Volume Elements
• Date Radiation Started
• Location of Radiation Treatment (1 facility or multiple)
• Number of phases of radiation to this treatment volume
• Radiation treatment discontinued early
• Total dose (delivered, Sum from all phases in course)
• Radiation / Surgery sequence
• Date Radiation Ended
STandards for Oncology Registry Entry (STORE) released 2018.North American Association of Central Cancer Registries (NAACCR) Version 18 Data Standards and Data Dictionary
Phase Elements (*a phase ~ a plan)
• Primary Treatment Volume • primary anatomic target, coded list
• Radiation to Draining Lymph Nodes
• Modality • Examples: 02 External beam, photons; 04 External beam,
electrons; 08 Brachytherapy, Interstitial, HDR
• Technique • Examples: Low energy x-ray / photon, 2-D, Conformal or 3-D,
Intensity Modulated, SBRT / SRS [NOS, robotic, or Gamma Knife], CT-guided online adaptive , MR-guided online adaptive
• Dose per fraction (cGy)
• Number of fractions (delivered)
• Total dose (delivered)
Cancer Registry Registrars
Comb for data in various hospital databases and treatment summary notes.
Often must interpret free text notes – error prone
Would benefit from a standard treatment summary.
Would benefit more from a curated data warehouse.
Site
Minimum Data Elements, CoC Treatment Summary follow Cancer Registry:
• Anatomic site of each prescribed dose level
• Primary anatomic site(s) targets for each dose level
• Nonoverlapping
• MDE recommends using the names in STORE phase1 Radiation Primary Treatment Volume table.
• The CoC Treatment Summary stresses not to use ‘PTV’ but does use normal structure nomenclature from AAPM Task group 263.
Charles S. Mayo, Jean M. Moran, et al, American Association of Physicists in Medicine Task
Group 263: Standardizing Nomenclatures in Radiation Oncology, International Journal of
Radiation Oncology*Biology*Physics, Volume 100, Issue 4, 2018, Pages 1057-1066, ISSN
0360-3016, https://doi.org/10.1016/j.ijrobp.2017.12.013
What do you use?
Sharing of Previous Treatment Records
• Minimum Data Elements or Treatment Summary+ Patient identifying information including date of birth
+ Isodose plots and DVH reports
+ DICOM Image, RD and RS files (make sure to include a plot for import verification.)
• Secure, encrypted email or drop box- Caution, some email systems reject emails with links in them.
Medical Physics? MPPG 10: Scope of practice
Clements, J.B., Baird, C.T., de Boer, S.F., Fairobent, L.A., Fisher, T., Goodwin, J.H., Gress, D.A., Johnson, J.L., Kolsky, K.L.,
Mageras, G.S., Marsh, R.M., Martin, M.C., Parker, B., Pavord, D.C., Schell, M.C., Anthony Seibert, J., Stevens, D.M., Tarver, R.B.,
Waite‐Jones, C.G. and Wingreen, N. (2018), AAPM medical physics practice guideline 10.a.: Scope of practice
for clinical medical physics. J Appl Clin Med Phys, 19: 11-25. doi:10.1002/acm2.12469
“The QMP’s scope of practice
categorizes medical physics
activities into the following
areas: Administrative, Clinical
services, Education,
Informatics, Equipment
performance evaluation (EPE),
Quality, Safety.”
“Their deep understanding of
the performance of radiation
equipment and information
systems brings value to clinical
problem solving and the
technology assessment
process.”
Initial Steps
1. Identify how and where MDEs are entered in your system currently
2. Ask around, find out if anyone is pulling Rad. Onc. data in your institution currently. If so, how are they using it? Are they pulling it from the correct place? Talk to your cancer registrars and see if they have issues interpreting the data.
3. Make improvements to how your MDEs are entered.
4. Find ways for off the shelf data sharing. Talk to the EMR vendors and other software developers.
5. Be involved in reporting and infrastructure decisions.