Quick-Reference GuideVersion: August 2021

The St. Jude Global Metrics and Performance Unit (“METRICS”) develops concepts and toolsfor promotion of equity and scale-up of effective interventions in global pediatric oncology. Ouraim is to accelerate progress towards our shared vision of cure and quality care for all childrenwith cancer. The unit draws from various methodologies, ranging from social epidemiology, healthservices research, and quality improvement and implementation science to design thinking. Theapproach emphasizes end-user empowerment to build local expertise in areas of metrics andperformance and, as a community of experts, generate global standards, feasible targets, andmeaningful benchmarks in global pediatric oncology. To achieve this, we equip care teams andinstitutions with the tools to measure inequities, evaluate causes, transform their thinking,respond timely to identified gaps, innovate, and continually improve health care services in theirsettings.

PrOFILE is a a dynamic 360o evaluation of health services delivery that helps care teams and institutions committed to increasing childhood cancer survival define an improvement strategy. PrOFILE was developed by the Metrics and Performance unit from St. Jude Global and is part of the overall strategy developed by St. Jude Global called the St. Jude Global Cancer Analytics Resource and Epidemiological Surveillance System (SJCARES).

PrOFILE is a comprehensive, modular, and guided institutional self-assessment; it allows multiple stakeholders to identify challenges in service delivery and prioritize solutions to improve Pediatric Hematology and/or Oncology (PHO) care locally. It acts as a diagnostic tool, identifying key issues requiring attention and improvement. We have developed two versions, the Full Version and the Abbreviated Version.

PrOFILE is not a survey; it is designed as a collaborative experience. Using educational resources, quality improvement exercises, and design thinking methods, it becomes a platform to build local capacity in quality improvement and a community of experts in this field.

PrOFILE considers the existing heterogeneity across pediatric cancer centers. It aims to promote equity, reduce barriers to PHO care, and integration with general child health services. Its data-driven approach facilitates decision making within economic feasibility.

What is its purpose?

It should be used by teams and institutions providing PHO care that are committed to improving childhood cancer care and survival locally and globally.

Who should use PrOFILE?

PrOFILE is divided into 12 modules. These modules are based on evidence and expert consensus and primarily contain questions with defined desirable thresholds to facilitate scoring and visualization of results. Each module is complemented by educational sessions and hands-on exercises that strengthen data collection and assessment of practices and processes at the facility.

How is it structured?

In the Full Version, each participating PHO facility identifies a physician lead, a site coordinator, and a core group of clinicians to conduct the assessment. The PrOFILE site coordinator and physician lead collect the objective data about the facility. Additional questions are directed to the rest of the assessment team in order to collect the point-of-care (POC) staff’s perspective.

Each member of the team answers each module during an established time period. St Jude staff guides the assessment team through general uses for the data collected and on how to interpret the site-specific results. The primary data are for the team and facility to use and leverage as they see fit to improve childhood cancer care delivery locally and globally.

PrOFILE phases lead the team to dynamic prioritization, emphasizing areas amenable to quality improvement and implementation science methodologies. Repeated use of PrOFILE permits insightful benchmarking and local tracking of progress over time. In the Abbreviated Version, data collection activities are simplified.

How does it work?

Yes, while in the Full Version of PrOFILE the priority is supporting an institutional journey and taking a “look within” and the Abbreviated Version emphasizes a look “across institutions”, most items in both versions have been assigned a score and a desirable boundary. This facilitates visualization of results and allows comparison between the facilities’ results and pertinent comparators (by region, country-income level, PHO level, and others). The quality improvement and design thinking methods utilized complement the quantitative results and strengthen the evaluation with qualitative elements. This is what we call “insightful benchmarking”.

Is PrOFILE suitable for inter-facility comparison?

Care teams and institutions all around the world are committed to improving childhood cancer outcomes; the big question, particularly in resource-limited settings, is how to “do it.” PrOFILE helps these care teams and institution determine, prioritize, and “visualize” where they are, where they want to be, and the path to getting there.

What is

Premise for PrOFILE’s Development

?

?

1. Many don’t really know where they stand

3. Even less know how (“exactly”) to get there

1

2

3

4. For most, “the further along, the harder it gets”

PrOFILE Core Principles

30%

84%

The “goal” (survival in high-income settings)

2. It is hard to set a goal

Core principle #1:Recognize and embrace heterogeneity

Goal: Identify challenges amenable to quality improvement methodologies

Visualizing your path to optimalcare delivery

Childhood Cancer Survival Gap

Global estimated survival

Core principle #2:Work to promote equity

Goal: Don’t leave out those in need of most help

Core principle #3: Work to reduce barriers

Goal: Facilitate evidence needed by stakeholders to address barriers

Core principle #4: Acknowledge economic feasibility; invest wisely

Goal: Facilitate evidence needed by stakeholders to set priorities

Core principle #5: Promote integration with general child health services

Goal: Address the perception of PHO practice in silos

Core principles #6: Understand components and processes (not just the outputs)

Goal: Embrace a culture of quality improvement

The reality is….

EM001 EM002

EM005 EM004

National Context

Facility and Local Context

Personnel Service Integration

Chemotherapy Surgery Outcomes

Finances andResources

Service Capacity

Diagnostics Supportive Care

RadiotherapyPatients

Modules

National ContextThis module gathers information about health policies of the country in which PHO care is being delivered.

DiagnosticsThis module examines the PHO facility’s capacity, resources, and practices for diagnostic imaging, pathology, and laboratory medicine.

Facility and Local ContextThis module covers information about the general characteristics and infrastructure available at the PHO facility undergoing the self-assessment.

Finances and ResourcesThis module examines the PHO facility’s overall funding mechanism and the direct costs to patients resulting from childhood cancer care delivery.

PersonnelThis module gathers information about the healthcare workforce available at the PHO facility.

Service CapacityThis module gathers information about the PHO facility’s volume, workflows, and registration practices.

Service IntegrationThis module covers information about multidisciplinary care conferences and communication practices at the PHO facility.

ChemotherapyThis module examines the PHO facility’s capacity, capacity, resources, and practices for delivering chemotherapy.

Supportive CareThis module explores the PHO facility’s practices and resources for delivering supportive care services.

SurgeryThis module gathers information about the PHO facility’s infrastructure and practices for delivering surgical services.

Radiation TherapyThis module gathers information about the PHO facility’s infrastructure and practices for delivering therapeutic radiation services.

Patient and OutcomesThis module examines a PHO facility’s overall case mix and clinical outcomes.

PHO=Pediatric Hematology and/or Oncology

PrOFILE Full Version Implementation Process

Reports

0%10%20%30%40%50%60%70%80%90%

100%

A

B

C

Overall ScoreA: More than 75% of possible scorable itemsB: 50–75% of possible scorable itemsC: Less than 50% of possible scorable items

Each facility receives a score-based report and a descriptive report.

The score-based report includes graphs and tables that allow visualization of results by module and domain and assist in identifying areas of strength and opportunity.

The polar graph illustrates the total scores of all 12 modules and facilitates appraisal of the overall results. The subsequent sections present data for each module in the form of bar graphs and tables. Bar graphs depict the score for each domain within the module and tables provide a list of the PHO facility’s strengths and opportunities for each module based on pre-established desirable thresholds and expert review. Radar graphs reveal differences between perspectives, including the PrOFILE Champions or point of care staff’s impression and the calculated score for each module.

The descriptive report summarizes the responses for each of the 12 modules. Responses are categorized based on the type of respondent.

Step 1: Validate the final reportsStep 2: Reflect on resultsStep 3: Conduct a local workshopStep 4: Develop an action plan

Step 1: Engage leadershipStep 2: Build the assessment teamStep 3: Receive shipped materialsStep 4: Enroll in online platformsStep 5: Complete IHI Open School &

PrOFILE Classroom pre-work

Element 1: Data entry in PrOFILE PortalElement 2: PrOFILE Classroom activitiesElement 3: Weekly mentoring sessionsElement 4: Data validationElement 5: Local Quality Improvement

exercises

PHASE 3: INTERPRETATION AND ACTIONPHASE 1: PREPARATION PHASE 2: ASSESSMENT

PrOFILE Benchmarking

Region XYZ

REGIONAL

National Context

Facility and Local Context

Finances and Resources

Personnel

Service Capacity

Service Integration

Diagnostics

Chemotherapy

Supportive Care

Surgery

Radiation Therapy

Patients and Outcomes

Global Standards

Goal*

UCL

LCLStan

dard

ized

Sco

re V

alue

0.1

0.2

0.3

0.4

0.5

0.6

0.7

0.8

0.9

1

*Regional and Income-level specificUCL=upper control limit; LCL=lower control limit

GLOBAL

Over time, PrOFILE enables us to learn about what is needed to improve childhood cancer outcomes across the globe, as well as how institutions navigate the path to improving them. The results provide a facility with meaningful benchmarking. This allows them to look at their results along with comparable institutions based on region, type of facility, and/or income level of the country. We believe this will allow for more transparent and steadier progress over time.

INTERNAL

Hospital XYZ

1= PrOFILE Champions perception; 2=End-user perception

To learn more about PrOFILE, we invite you to view the following videos:

• What is PrOFILE?: https://s.stjude.org/video/player.html?videoId=6242704512001

• PrOFILE Versions: https://s.stjude.org/video/player.html?videoId=6242707342001

• PrOFILE Overview: https://s.stjude.org/video/player.html?videoId=6085645494001

• PrOFILE Core Principles: https://s.stjude.org/video/player.html?videoId=6085643648001

• PrOFILE Rationale: https://s.stjude.org/video/player.html?videoId=6085644998001

• About Metrics and Performance: http://s.stjude.org/video/player.html?videoId=6242706907001

If you have additional questions or comments, we invite you to email us at profile@stjude.org.

Additional Information