The anatomy of health data Dr Heather Leslie @omowizard Anatomy - - PowerPoint PPT Presentation

The anatomy of health data

Dr Heather Leslie

@omowizard

Is Is our health data fi fit for purpose?

Anatomy (Greek anatomē, “dissection”) is the branch of biology concerned with the study of the structure of organisms and their parts. Health data – any data "related to health conditions, reproductive

• utcomes, causes of death, and quality of life" for an individual or

population.

We have a responsibility to question the structure & design rigour of our atomic health data

Health data design

Intent

Single purpose – project or application Broad reuse Short term 10, 20, 50 years

Who?

Software engineers Business analysts Clinicians Informaticians

Source?

Convert paper questionnaire forms Replicate paper records Careful requirements gathering

Type

??? Persistent, summary data Event-based Questionnaire

Review

Clinical advisory board Broad range of professions Broad range of health domains Broad range of geographical locations

Health data design

Intent

Single purpose – project or application Broad reuse Short term 10, 20, 50 years

Who?

Software engineers Business analysts Clinicians Informaticians

Source?

Convert paper questionnaire forms Replicate paper records Careful requirements gathering

Type

??? Persistent, summary data Event-based Questionnaire

Review

Clinical advisory board Broad range of professions Broad range of health domains Broad range of geographical locations

Smoking example

• SINGLE organisation
• 15 years of questionnaire data
• 7 different diseases
• 83 data dictionaries
• Each disease
• Diagnosis
• Family history
• Social history
• Lifestyle
• Pregnancy
• Lab results
• Measurements
• Mental state
• 4 different data managers over the years, tweaking…

Intent?

• Cigarette smoking?
• Tobacco smoking?
• All smoking?
• Tobacco use?
• Smoking
• Non-smoking eg snus
• Typical use
• Episodes of use
• Actual use
• On a specified day/date
• Average in the past 5 years
• Aged 20-30

Overview

• Summary/cumulative
• Pattern of tobacco

smoking

• Record once, updated

with new versions

Diary

• Measurement
• Recording of tobacco smoking

& associated context

• Recorded as discrete separate

events

Value added questionnaires

Questionnaire

Context/definitions are implied

Standardised pattern

Context/definitions are explicit

• Ever smoked? Yes/No
• Ever smoked regularly for at least a year? Yes/No

Ever smoked? Never/Current/Former ± Definition of ‘Smoker’ Ever smoked 7 cigarettes? Yes/No Ever smoked cigarettes? Never/Current/Former ± Definition of ‘Smoker’ Do you regularly smoke cigarettes? Yes/No Cigarette smoking pattern? Daily/non-daily Average number of cigarettes per day? '1-4’; '5-14’; '15-24’; '25-39’; '40+’.

• Typical use? /day; /week

OR

• Amount of cigarettes? /day, /week, /month

+ Interval of time (start date/end date); Average

Chaotic Proprietary > Fragmented Opaque > < Systematic Open standard < Coherent Transparent

Silos are unsustainable

Silos are unsustainable

Time for an alternative approach?

Open atomic data standards

Change of focus

• Data, not applications
• Standardise atomic data
• National clinical data dictionary
• Independent of vendors/systems
• Complements existing standards
• Bootstrap new development
• Road map for existing vendors/projects
• Platform ecosystems, not silos
• Plug and play applications
• Data sharing
• …

Benefits

• Common, shared
• Health data
• EHR/EMR; Research; Registries; Reporting;

Population health

• Clinical Decision Support
• Semantic queries
• Exchange whole health record
• Aggregation/Analysis
• Big Data
• AI & Precision medicine
• …

www.openEHR.org/CKM

ISO 13606-2

Little data is the newest revolution!

• Coherent, coordinated, connected

health data

• Open standards
• Designed strategically
• Clinically verified as 'fit for

purpose’

• Independent of any single clinical

system, vendor or project.

• Realise the value of our health

data; stop battling the chaos; harness it to make a difference

Contact

Dr Heather Leslie

Atomica Informatics

heather.leslie@atomicainformatics.com @omowizard / @atomicainfo

• penEHR Foundation

@openEHR / @clinicalmodels