Care Register for Health Care

Register description

Register description, in accordance with the Personal Data Act (523/1999)

Controller

Name: Finnish Institute for Health and Welfare (THL)
Postal address: B.O. Box 30
Postcode: FI-00271 Helsinki, Finland
Visiting address: Mannerheimintie 166, Helsinki
Telephone: +358 29 524 6000

Person responsible for the register

Name: Jutta Järvelin
Title: Senior Medical Officer
Postal address: THL/Information Department/PO Box 30, FI-00271 Helsinki
E-mail: firstname.lastname(at)thl.fi

Other persons maintaining the register

Name and tel.: Jouni Rasilainen tel. +358 29 524 7204

Name of the register

Care Register for Health Care

Grounds for maintaining the register

Legislation:

  • Act on National Personal Data Registers Kept under the Health Care System (556/1989), Section 3
  • Decree on National Personal Data Registers Kept under the Health Care System (774/1989), Sections 1 and 2, as amended by decree (1671/1993)
  • Act on the National Institute for Health and Welfare (668/2008), Section 2
  • Act on Specialised Medical Care (1062/1989), Section 5, Primary Health Care Act (66/1972), section 4, Mental Health Act (1116/90), Section 2

Purpose of the register

The purpose of the register is to collect data on the activities of health centres, hospitals and other institutions providing inpatient care and on the clients treated in them as well as on home-nursing clients for the purposes of statistics, research and planning.

Data content of the register

The Care Register for Health Care is a continuation of the Hospital Discharge Register, which has data on patients discharged from hospitals between 1969 and 1993. Different kinds of changes have been made to the data content of the register during this time. The most essential data content is unchanged with regard to providers of hospital services and specialised health care, patients, admission and discharge, diagnoses, and treatments provided.

The Hospital Discharge Register was replaced with the Care Register for Health Care as of 1994. The Care Register has more comprehensive data on the use of services and service users than the Hospital Discharge Register. While the latter only contained data on patients discharged from inpatient care in hospitals, the Care Register contains data on:

  1. patients discharged from inpatient care
  2. count of patients in inpatient care in health centres and hospitals on 31 December
  3. day surgeries
  4. specialised outpatient care

Every year, data suppliers are provided with a manual on the data content and on how to submit care notifications (HILMO; Sosiaalihuollon ja terveydenhuollon hoitoilmoitus. Määrittelyt ja ohjeistus, THL Ohjeita ja luokituksia). The manual also includes instructions and definitions of the data content.

Basic data in a care notification:

(applies to clients visiting specialised outpatient care as well as patients discharged from inpatient care and day surgery):

Service provider:

  • Code
  • Code extension
  • Service branch
  • Speciality

Data on the patient/client:

  • Personal identity number
  • Municipality of residence
  • Country code for non-Finnish residents

Data on start of care:

  • Referring party
  • Code and code extension of the institution that referred the patient
  • Waiting list entry date and date of admission
  • Type of admission
  • Route of admission
  • Code of the place of discharge (if the person was admitted from another institution)

Data on the treatment received by the patient/client and on the grounds for a client relationship:

  • Reason for seeking care
  • Diagnoses
  • External cause
  • Type of accident
  • Need for care on date of admission/discharge/count
  • Procedures and interventions
  • Decision on long-term care (yes/no)
  • Patient has an advanced cardiac condition (yes/no)
  • Patient is a psychiatric patient (yes/no)
  • Number of home days

Data on discharge from care:

  • Date of discharge
  • Further treatment/which services
  • Code and code extension of the institution of further treatment

Additional data on procedures involving patients with advanced cardiac condition:

  • Type of procedure
  • Class of procedure
  • Functional capacity (NYHA)
  • Risk score
  • Complications
  • Level of urgency

Additional data on psychiatric patients:

  • Route of admission to psychiatric inpatient care
  • Length of involuntary care as care days
  • Number of admissions to psychiatric inpatient care
  • GAS at admission and discharge
  • Medication
  • Coercive measures
  • Meetings with relatives or others

The patient count on 31 December collects the same data on patients in inpatient care as on discharged patients with the exception of discharge date and further treatment data.

Regular data sources of the register, compiling the register

Instructions on how to submit care notifications are provided annually in a manual (HILMO; Sosiaalihuollon ja terveydenhuollon hoitoilmoitus, Määrittelyt ja ohjeistus). The HILMO manual includes guidelines on

  • which health service providers (hospitals, health centres and home-nursing service providers) are obliged to submit information to the Register;
  • what the grounds for the disclosure of data are;
  • what constitutes data content;
  • how to submit information to the Register; and
  • how to ensure data confidentiality.

The data are sent to the register controller electronically by using an encrypted connection or by registered post on encrypted CDs or memory sticks. The care register data for each year are collected, checked and corrected and submitted to the national register during the following year.

Regular disclosure of register data

Disclosure of register data is governed by Section 4 of the Act on National Personal Data Registers Kept under the Health Care System (556/1989), which stipulates that data containing confidential information can only be disclosed for a specific research project and by permission.

Linking the register to other personal data files

Data in the Care Register for Health Care are used for statistical purposes together with the Care Register for Social Welfare and the Register for Primary Health Care Visits in order to describe the use and costs of services and the distribution of services among different population groups, broken down by region.

Access to data, confidentiality

The data stored in the Register are confidential under Section 4 of the Act on National Personal Data Registers Kept under the Health Care System (556/1989). However, THL may grant permission to disclose care register data for specific scientific research purposes under Section 4 of the Act on National Personal Data Registers Kept under the Health Care (556/1989). The disclosure of data must be in accordance with Section 19 of the Personal Data File Act (471/1987). Statistical information and data sets stored in the Register can be disclosed, provided that any information classified as confidential has been removed and the data subjects cannot be identified.

Number of persons recorded in the personal data file

Data on some 1.7 million persons are reported to the Care Register for Health Care every year, and the number of periods of care reported amounts to over 1.5 million every year. Over 6 million outpatient visits in specialised health care are reported to the register every year.

Right of access to data

Data subjects and their representatives have no right of access to the data entered into the Register, because the data are used solely for research and statistical purposes.

Rectifying erroneous data

Once an error is detected in the care register, efforts are made to correct it in connection with the compilation and maintenance procedures of the register. Data suppliers themselves are usually asked to correct any errors or deficiencies detected in their data. The rules and procedures regarding data checks and automatic correction are described in the HILMO manual published annually.

Principles concerning protection of the register

Data protection and information security for the register comply with THL's information security policy (THL/957/3.01.00/2011) and any related guidelines.

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