Integration of rare diseases into the public health ... · Excel Access DBF Ficheros de texto etc. Data Information We need to add intelligence to data to obtain…. •SGBDR

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Integration of rare diseases into the public health information system of the Community of

Madrid.

Dr. Astray

Chief of epidemiology – Public Health

C. of Madrid

MadridRDR

Necesidades de Información salud Pública | Página 2

Index

01. Introduction

02. Information needs in EpidemiologicalSurveillance on rare diseases

03. How to get the information needed tofulfill the functions of the PublicHealth Surveillance and comply withdata protection?

04.- Outputs information and examples

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Measure of population healthIndividual Community

Epidemiological surveillance Community health


THE FACTS

The information necessary to protect the health of citizens is one of the

most sensitive information, in terms of data protection.

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Prior situation: Design

•Law 12/2001 of December 21, Health Planning Community of Madrid

•Article 55. Functions:

•The promotion of epidemiological surveillance of both communicable and noncommunicable diseases, and all the determinants of health-

disease process related to the individual's interaction with the environment. To this end, and subject to the provisions of state and regional standard for the protection of personal data, data relating to

health will be transferred to the Health Administration of the Community of Madrid by the responsible of the files, whatever their ownership, when

they are necessary for prevention of disease, or to perform epidemiological studies


prior situation

sida DireccionesTeléfonos

E-mail

Factores de riesgo

desenlace

brotes DireccionesTeléfonos

E-mail

Factores de riesgo desenlace

vacunasDireccionesTeléfonos

E-mail

Factores de riesgo desenlace

meningitisDireccionesTeléfonos

E-mail

Factores de riesgo

desenlace

Situación previadiseases filiationdata

Risk

factors outputs

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Information System in Public Health – SISPAL

Nuevo diseño

Datos de personaTIS, Padrón; aplicaciones

Etc…….

DireccionesTeléfonos

E-mail

EnfermedadesAtributos,

Vacunas..etcFechas

Factores de riesgo

Desenlacedepuración

identificaciónDatos especialmente

protegidos

Datos seguridad altaSISPAL

filiation data events


Design of SISPAL

Accesos InformaciAccesos Informacióónn

Cuadros Mando S. I. Geográfica

AtenciónPrimaria

CMBD

TIS

Padrón

ImportaciónDepuración

Mortalidad

B. D.

PersonasEnfermedades

Entes (Empresas)Instalaciones

ProductosServiciosAnimales

SISPALSISPALAplicaciones

Encuestas

Otras fuentes

Grabación

AtenciónPrimaria

CMBD

TIS

Padrón

ImportaciónDepuración

Mortalidad

•TIS

Cubos

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Data analysisStorage and Data Management

Organizations have a huge amount of data

Scattered in multitude of sources of different manufacturers

SGBDR

Excel

Access

DBF

Ficheros de texto

etc.

Data < > Information

We need to add intelligence to data to obtain….

•SGBDR


•Data sources

SQLServer

Exceletc…

Oracle

•user access

(Data Warehouse)

Analysis Services

OLAP

Business Intelligence Systems Development

Secondary

databases

•Mortality

etc

•Primary

care

CMBD

•Excel

Work area

integration services

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• Table events• Measures• Dimensions

Business Intelligence Systems: data cubes structure

•design data

•Star schema


Data cubes : Picture and performance

cases240

•Ecuador

•Francia

•Argentina

España

•event date

2013•2006 •2007 •2008

•RD 4

•RD 2 •RD 3

RD 1

performance

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TXTTXT

TXT

• Transformation of data into information

• Incorporating data from source

Códigos CIEProcedimientos

Hospitales Públicos

CMBD

/ Hospitales Privados / Ambulatorios

Business Intelligence SystemsDevelopment

• transformation of data into information

CMBD_CIE_CausasTipo_Hospital

CMBD_HECHOS

CMBD

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New technologies set a paradigm shift in the monitoring function

•Share knowledge

•1. HORUS•1. Objetivos

• It is to promote professional collaboration, to share medicalinformation and to allow continuity of care between primary careand specialized care.

•Evitar la duplicidad de pruebas a los

pacientes

•Acceso a la historia clínica desde

cualquier punto de la red sanitaria

•ensure integral patient medical care

any medical act generates information that can and

should be used to patients’sbenefit

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Information Needs on rare diseases

Public Health

epidemiological analysis

description of cases

comparison of rates

geographical representation

hypothesis generation and knowledge

development of studies

Publichealth

screenings

Hospitals

Primarycare

Farmacypatients

citizens

design and control

planning



Hospitals:

Where do patients in each disease are attended?

Experience

Quality control and evaluation

Planning

Design units

Improving the care process

Reference Centers

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Pharmacy

Planning costs

Rationalization expenditure hospital

Equity


Registration of rare diseases - example

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Mortalidad por todas las causas en hombres Zonas Básicas de Salud

Razones de Mortalidad Estandarizadas

Zonas Básicas con mayor mortalidad

02. Information needs in Public health.Maximization the estimation of indicators (mortality causes in small areas)


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Conclusions

•1.- The role of Public Health Surveillance requires designs

• "Adapted" maximum security and data protection.

•2.- Information systems need highly specialized resources in electronic health records and their potential to generate information to improve patient care.

•3.- Public health is essential to the rare disease surveillance and other processes.

•4.- The role of population registers of rare diseases is to improve patient care, and know the epidemiology of these disease

•4.- The visualization of the information by patients and citizens is an important aspect to be aware of.

¡Muchas gracias!

Thank you so much!!

Documents

Integration of rare diseases into the public health ... · Excel Access DBF Ficheros de texto etc. Data Information We need to add intelligence to data to obtain…. •SGBDR