Stephen Graves

Leveraging Big Data for

Responsible Stewardship, Change, and Collaboration

Overview of Presentation

What is Big Data

AOA NJRR as an example of Big Data

Benefits

Limitations and Risks

What is Big Data?

• Consequence of the digital age

• The increasing availability and capacity to continually collect, store and link very large datasets of personal information

• Involves both traditional and “new” approaches to analytics

• Analysis is undertaken in real time

• Specifically in healthcare it provides the opportunity for a new research paradigm

• The use of Big Data is often referred to as a learning healthcare system

4

4

A Learning Health Care System

Evidence is

continually refined

as a byproduct of

care delivery

Information-rich, patient

focused enterprises

Information and

evidence transform

interactions from

reactive to

proactive (benefits

and harms)

Actionable information

available – to clinicians AND

patients – “just in time” From “A Learning Health Care System for Cancer

Care” by Carolyn Clancy, MD, Agency for

Healthcare Research and Quality

Big Data

Definition

• No accepted single definition

• Data volume

• Speed and nature of data collection

• Structured (defined (discrete) data fields) EHR’s, registries, administrative, claims and taxation data sets, PROM’s etc

• Unstructured data (undefined data fields) natural language processing, image analysis, monitoring device inputs, internet derived data (social media, sensory networks) etc

• The use of specific developed, developing and yet to be developed analytics

• Computing power required

Big Data in Healthcare “Simple Definition”

“The use of continually collected and linked, real-time national and/or international population data sets used for pattern identification and subsequent detailed subset analysis”.

Evidence Heirarchy

Evidence Heirarchy

Where Does Big Data

Fit?

Perhaps it Doesn’t

• Traditional evidence is based around hypothesis testing

• Generally, Big Data is used to generation hypotheses

• The analytical approach identifies patterns of difference (comparative performance)

• These differences are then further analysed to assess the impact of confounders

• On occasion it is possible to identify causality

• This however is not a prerequisite to obtaining major clinical benefit

Australian Orthopaedic Association National Joint Replacement Registry

Australian Orthopaedic Association Partners with

• South Australia Health and Medical Research Institute

• University of South Australia

What is a Registry? Registries are continuous quality assurance programs

(national or large regional) integrated into healthcare systems.

They are appropriately designed, governed and managed to ensure that they bring about significant improvement in cost effective health outcomes for patients and health systems

Continuous Quality Improvement

Collect Data

Validate

Analyse

Identify

Report

Monitor

AOANJRR Background

• Initiative of and fully owned by the Australian Orthopaedic Association

• Data collection commenced in 1999 with full national implementation in 2002

• Funded by the Australian Federal Government (Federal legislation 2009 implemented a cost recovery process to permanently fund the Registry)

• Voluntary for patients, surgeons and hospitals

• 100% participation of surgeon and hospitals (private and public)

• Not so lucky with patients as 45 out of just over 1 million patients have opted off

Minimum Data Set

Patient Patient Demographics

Diagnosis Surgeon Hospital

Joint Side

Procedure Prostheses (cat & lot number)

1.3 Million Procedures 110,000 p.a.

Minimum Data Set

Patient Patient Demographics

Diagnosis Surgeon Hospital

Joint Side

Procedure Prostheses (cat & lot number)

Government Joint procedure data from each State

and Territory which also includes race

Minimum Data Set

Patient Patient Demographics

Diagnosis Surgeon Hospital

Joint Side

Procedure Prostheses (cat & lot number)

Government Joint procedure data from each State

and Territory which also includes race

Prostheses Library Identifies features

for 5 million individual implants

Minimum Data Set

Patient Patient Demographics

Diagnosis Surgeon Hospital

Joint Side

Procedure Prostheses (cat & lot number)

1.3 Million Procedures

Government Joint procedure data from each State

and Territory which also includes race

Prostheses Library Identifies features

for 5 million individual implants

National Death Index biannually

Minimum Data Set

Patient Patient Demographics

Diagnosis Surgeon Hospital

Joint Side

Procedure Prostheses (cat & lot number)

Government Joint procedure data from each State

and Territory which also includes race

Prostheses Library Identifies features

for 5 million individual implants

National Death Index biannually

Large State and National

Longitudinal Cohort studies

Other National Registries

Other International Arthroplasty

Registries

Minimum Data Set

Patient Patient Demographics

Diagnosis Surgeon Hospital

Joint Side

Procedure Prostheses (cat & lot number)

Government Joint procedure data from each State

and Territory which also includes race

Prostheses Library Identifies features

for 5 million individual implants

National Death Index biannually

Large State and National

Longitudinal Cohort studies

Other National Registries

Other International Arthroplasty

Registries

App development to electronically collect

patient reported outcomes nationally

Minimum Data Set

Patient Patient Demographics

Diagnosis Surgeon Hospital

Joint Side

Procedure Prostheses (cat & lot number)

Government Joint procedure data from each State

and Territory which also includes race

Prostheses Library Identifies features

for 5 million individual implants

National Death Index biannually

Large State and National

Longitudinal Cohort studies

Other National Registries

Other International Arthroplasty

Registries

App development to electronically collect

patient reported outcomes nationally

National Prescription

Data

Minimum Data Set

Patient Patient Demographics

Diagnosis Surgeon Hospital

Joint Side

Procedure Prostheses (cat & lot number)

Government Joint procedure data from each State

and Territory which also includes race

Prostheses Library Identifies features

for 5 million individual implants

National Death Index biannually

Large State and National

Longitudinal Cohort studies

Other National Registries

Other International Arthroplasty

Registries

App development to electronically collect

patient reported outcomes nationally

National Prescription

Data

National Private Health Billing

Data

Minimum Data Set

Patient Patient Demographics

Diagnosis Surgeon Hospital

Joint Side

Procedure Prostheses (cat & lot number)

Government Joint procedure data from each State

and Territory which also includes race

Prostheses Library Identifies features

for 5 million individual implants

National Death Index biannually

Large State and National

Longitudinal Cohort studies

Other National Registries

Other International Arthroplasty

Registries

App development to electronically collect

patient reported outcomes nationally

National Prescription

Data

National Private Health Billing

Data

State and Territory Hospital

Admission Data

State and Territory Hospital

Emergency Department

Admission Data

Minimum Data Set

Patient Patient Demographics

Diagnosis Surgeon Hospital

Joint Side

Procedure

Prostheses (cat & lot num Prce

Government Joint procedure data from each State

and Territory which also includes race

Prostheses Library Identifies features

for 5 million individual implants

National Death Index biannually

Large State and National

Longitudinal Cohort studies

Other National Registries

Other International Arthroplasty

Registries

App development to electronically collect

patient reported outcomes nationally

National Prescription

Data

National Private Health Billing

Data

State and Territory Hospital

Admission data

State and Territory Hospital

Emergency Department

Admission data

Registry Nested Clinical Trials

Enabling trial specific data to be collected including

radiology

AOANJRR Provides Information to Multiple Stakeholders

• Consumers

• Surgeons

• Hospitals and Health Care Systems

• Government Health Departments

• Government Regulators

• Medical Device Companies

• Health Insurers

Nationally and Globally

AOANJRR Provides Information to Multiple Stakeholders

• Annual Report (16 separate reports) including Lay Report

• Ad hoc reports (300 individual data requests each year) from government, industry, surgeons, academic and research organisations

• Stakeholder specific websites (surgeon, orthopaedic manufactures and regulators (including international) provide real time data

• National and international presentations (approx. 100 per year)

• New Publication accepted in refereed journals every 3 weeks

Enhancing Surgeon Performance

• Surgeons can review their own performance through secure confidential website access

• Many examples of assisting surgeons to improve outcomes • Registry increasing the information provided • AOA addressing the issue of surgeons who don’t review data • CPD points for contributing, reviewing and consulting with

trusted colleagues about own performance

Risks

14.1%

Risks

1.0%

Knees – public vs private

Hospital variation - knees

Benefits of Big Data

• Researchers are able to ask and answer questions not possible using previously available techniques.

• Enables the study of population based comparative healthcare outcomes obtained in a community setting using real-time data.

• Report outcomes on current practice

• Monitor the impact of providing that information

• Bring about rapid practice and policy change

• The revision burden in Australia is decreasing:

o Revision hip procedures have decreased as a proportion of all hip procedures from

• 13.1% in 2002 to 8.9% in 2016

o Revision knee procedures have decreased as a proportion of all knee procedures from

• 8.8% in 2004 to 7.2% in 2016

• Over $600 million in savings to the Australian Health Care system in the ten years prior to 2014 ($16 million expenditure)

• Flow-on savings internationally (Australia 1-2% of Global market)

Assessment of AOANJRR Benefit

Limitations and Risks

• Ownership and Data Protection

• Methodology

• Education

Ownership and Data Protection

• Professional body (AOA) owns the data • Transparent, Accountable Governance (AOA Board and Multiple

stakeholder engagement) • Legislative protection for individual patient and clinician privacy • Ethical committee oversight for all data linkage projects and the use of

third party linkers providing access to non identifiable linked data • Sharing data and Reporting with responsibility • Consensual participation • Infrastructure, systems and policies to ensure the highest level of data

security

Methodology

• Data quality (requirements to define what is acceptable data quality appropriate verification processes)

• Methodology (use proven approaches and define in a clear and concise way the methodology used)

• Data harmonization globally

• Stepwise, evidence based development of Big Data Science

ISAR

• AOA initiative

• Global umbrella organisation for all national arthroplasty registries

• Committees responsible for data and methodology, harmonization, defining acceptable standards and quality and required reporting criteria.

• Provides and supports shared infrastructure development

• Promotes and coordinates Big Data Science development through inter-registry collaboration and major centres with specific expertise in this area

• Distributed data network development to enable data sharing

• Annual Scientific Meeting

• Executive meets monthly

• Committees meet more regularly

Education

• Community, professional, government and stakeholder knowledge and understanding of big data including data linkage needs to be enhanced

• Capacity build both analytical and clinician specialists

• Data custodians to open access with protection to appropriate organisations

Summary

• The use of Big Data is a developing science with many potential advantages some of which are yet to be fully realized.

• It needs to be protected, nurtured and developed in a way that reduces the very real risks of misinformation, data manipulation and data abuse.

• It is imperative that the data is used to focus on improving patient care and supporting healthcare professionals to achieve that in the most efficient and cost effective manner.

• Healthcare professionals need to take leadership in this field to ensure that the benefits of Bid Data are optimized

Acta

Thank You