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.