wisconsin department of health services early case capture of wisconsin pediatric and young adult...

Wisconsin Department of Health Services

Early Case Capture of Wisconsin Pediatric and Young Adult Cancers

Laura Stephenson, CTR

Quality Assurance Manager

and

Robin Malicki, Program Director

Wisconsin Cancer Reporting System

Wisconsin Department of Health Services

Wisconsin Comprehensive

Cancer Control Summit

May 28, 2015

Protecting and promoting the health and safety of the people of Wisconsin 2

Early Case Capture project history Current grant objectives Logic model Overview of work plan Challenges and opportunities WI pediatric cancer data snapshot

Overview

Early Case Capture Program History

2008 Caroline Pryce Walker Act was created to improve pediatric cancer research by:– Enhancing central cancer registry infrastructure – Implementing Early Case Capture (ECC) of

Pediatric and Young Adult Cancer (PYAC) – Ensuring pediatric cancer data quality,

completeness and timeliness – Reporting increased percent of pediatric cancer

cases within 30 days of diagnosis



Centers for Disease Control and Prevention (CDC) conducted a three year pilot project 2012 – 2014– Awarded funds to seven states– Focused on setting up electronic rapid case

reporting process from reporting facilities to the central cancer registries

– Analyzed incoming data for reporting gaps– Analyzed process for lessons learned



CDC announced a new competitive FOA for a five year project in May 2014

Five of the seven pilot project states were awarded funds and are in the implementation stage

Wisconsin and Rhode Island, the two new states were awarded funds for the planning stage


The Wisconsin ECC Team (Creating the evaluation plan)


Laura

Robin

Danielle

Current Grant Objectives – Planning Stage

Create procedures for processing Early Case Capture (ECC) reports

Identify and develop current and new electronic methods for reporting pediatric cancer cases to WI Cancer Reporting System (WCRS)

Monitor ECC processes through new and revised management reports



Increase ECC reporting:– Conduct assessment of Wisconsin hospital

capacity to report data meeting ECC guidelines– Identify nonhospital facilities treating pediatric

cancers and assess capacity to report ECC data– Identify out of state hospitals in the Children’s

Oncology Group that diagnose/treat Wisconsin residents and establish communication for future participation in the project



ECC Development– Provide ECC training, education and continuing

education sessions to reporting facilities on ECC reporting and technical requirements

– Work with the state’s designated Health Information Exchange (WISHIN) and the State Laboratory of Hygiene to develop data reporting, transmission and transport procedures to submit data via the Electronic Health Record



ECC Collaboration and Promotion– Collaborate with the Wisconsin research

community to define research gaps and increase ECC data use

– Collaborate with stakeholders to increase the public’s knowledge of ECC and ECC data use and pediatric cancer prevention



Develop an evaluation component

Focus on process and outcomes

“Living Document”

Protecting and promoting the health and safety of the people of Wisconsin 11Figure 1. CDC Program Evaluation Framework


Wisconsin ECC Logic Model

Wisconsin’s Logic Model - Inputs


WCRS Team– 1.33 FTE aggregate OHI staff time committed to

grant Contractors

– WI Statewide Information Network (WISHIN) Assessment, direct feed data, hospital collaboration

– WI State Lab of Hygiene (WSLH) Access to sites with CDC software


Facilities– Registrars/reporters– IS Development and Support Staff

Funding, Guidelines & Reporting Requirements– CDC



Collaborators and Advocates (to date)– Wisconsin Comprehensive Cancer Control Program– Wisconsin Cancer Council– American Cancer Society– I Back Jack Foundation– Medical College of Wisconsin– St. Vincent Regional Cancer Center– Carbone Cancer Center– Marshfield Clinic Research Foundation


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Wisconsin’s Logic Model - Activities

Assessment & Technical Capacity– WISHIN conducts data assessment– Collaborate with WISHIN and the State

Laboratory of Hygiene (WSLH) on reporting processes

– Implement mechanisms to receive ECC reports– Create Memorandum of Understanding (MOUs)

with out-of-state facilities serving Wisconsin youth.



Internal Capacity Building– Build Intra-Departmental support and awareness – Identify potential methods to incentivize reporting

Mini-grants to support facility IT infrastructure? On-site trainings and support? Concentrate on areas of the state with higher rates of

ECC cancer?– Test and implement data transmission methods– Strengthen and build partnerships



Education– Train facilities on ECC reporting standards and

requirements– Provide technical assistance– Provide motivational and awareness education to

all internal and external stakeholders, and to the public at large


Logic Model Initial and Intermediate Outcomes (Years 1-4)

Key partners (WISHIN and WSLH) and WCRS have technology in place and are able to transmit and accept data meeting the ECC requirements

WCRS has a facility tracking and monitoring system

ECC data are complete, accurate and available within 30 days of diagnosis


Data Items Collected


Full Name Primary Site

Birth Date Histology

Age Behavior

Social Security Number Laterality

Full current address Date of Diagnosis

Address at diagnosis Date of 1st Contact

Phone Number Sequence Number

Physician Contact Information Reporting Facility Information

Sex Follow up Contact Information

Race and Ethnicity

Logic Model Long-Term Outcomes (Year 5 and beyond)

Conduct and disseminate research studies using ECC data – Cancer control and prevention efforts improved

Increase cancer funding and research through policies

Reduce pediatric cancer incidence and mortality; improve survivor quality of life


ECC Reporting Challenges

The grant began in October 2014, but the new project manager was not hired until March 2015

WISHIN current MOUs with their facilities do not include transmission of cancer data in HL7 format; modifications may be required

ECC reporting is a “behavior change” from current reporting requirements



The Mayo Clinic in Rochester, MN diagnoses and/or treats about 10% of the Wisconsin resident pediatric population. However it will not release those cases to WCRS based on its interpretation of the Minnesota statute on data release. These are missed cases, mostly affecting the western border counties.



Timeliness - a review of the 2012-2013 diagnoses shows:– Time period % Timely

within 30 days 0%

1-6 months 19%

7-12 months 38%

12-18 months 43%


ECC Reporting Opportunities

Collaborate with WISHIN, the Wisconsin Health Information Exchange and the State Laboratory of Hygiene – Prioritize facility engagement through partner

collaboration– Purchase software to interface with WISHIN and

receive transmitted cases


ECC Reporting Opportunities

Relationships with the top six pediatric reporting facilities have been established

CDC data transmission software (N-IDEAS) installed to receive submissions from out-of-state hospitals– Currently receiving cases from St. Jude’s

Children’s hospital and MD Anderson


Childhood Cancer IncidenceRates in Wisconsin, 2008-2012

Age-adjusted rates are per 1,000,000 population and standardized to the 2000 US Standard Million Population


Childhood Cancer by Cancer Site, 2008-2012


County Rates by Quartile


Note: A minimum of 20 cases is needed to calculate a stable age-adjusted rate.

Data Source

Wisconsin Cancer Reporting System, Division of Public Health– Incidence data included cases received and

processed by 12/1/2014– Cancer site definition follows the International

Classification of Childhood Cancer The classification of childhood cancer is based on tumor

morphology and primary site, with an emphasis on morphology


The ECC Team – Revisited…(Eight months into the process)


Laura

RobinDanielle

Contact Information

Robin Malicki

Phone: 608-266-6781

Email: [email protected]

Laura Stephenson, CTR

Phone: 608-266-8926

Email: [email protected]

WCRS website:

http://www.dhs.wisconsin.gov/wcrs/index.htm

Fax: 608-266-2431


mailto:[email protected]

mailto:[email protected]



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