Care Register for Social Welfare, description of file

20 Jan 2010
Description of file, in accordance with the Personal Data Act (523/1999)

1. CONTROLLER

Name: National Institute for Health and Welfare (THL)
Postal address: P.O. Box 30
Postcode: FI-00271 Helsinki
Street address: Lintulahdenkuja 4, 00530 Helsinki
Tel. +358 20 610 6000

2. PERSON RESPONSIBLE FOR THE REGISTER

Name: Päivi Tossavainen
Position: Development Manager
Tel. +358 20 610 7670

3. OTHER PERSONS MAINTAINING THE REGISTER

Name: Raija Kuronen, tel. +358 20 610 7477; Kirsi Seppälä, tel. +358 20 610 7380

4. NAME OF THE REGISTER

Care Register for Social Welfare

5. GROUNDS FOR MAINTAINING THE REGISTER

Statutory. Based on the Act on the Statistical Service of the National Research and Development Centre for Welfare and Health (409/2001), as well as on section 5 of the Act on the National Institute for Health and Welfare (668/2008).

6. PURPOSE OF THE REGISTER

To produce data on care and services in social care: institutional care, housing services with 24-hour/part-time assistance, and home care. Also, to produce data on the activities and clients of these institutions, for purposes of national and regional monitoring and research.

7. DATA CONTENT OF THE REGISTER

The Care Register for Social Welfare contains data that have been gathered since 1995. Although a few minor changes have been made over the years, the core data content of the Register has remained almost unchanged, describing service providers, clients, client admissions and discharges, and the care and services received by clients.

Data suppliers are provided with a manual on submitting care notifications (HILMO; Sosiaalihuollon ja terveydenhuollon hoitoilmoitus. Määrittelyt ja ohjeistus, THL Ohjeita ja luokituksia).

Data content of the basic data form for care notifications

(applies to end of care and annual client census)

Service provider

1. Code
2. Code extension(applies to end of care and annual client census)

Data on the patient/client

3. Personal identity code (in the register, this code is replaced with an encrypted code and subsequently deleted)
4. Municipality of residence
5. Postcode
6. Service branch
7. Type of permanent accommodation

Data on start of care

8. Day of admission
9. The place from where the person has come into care
10. Code of the place of discharge (if the person has been admitted from another institution)
11. Code extension for the place of discharge
12. Reason for seeking care
13. Need for care at admission to care
14. Cost weight from the RAI (Resident Assessment Instrument) system, if known

Data describing care register data and grounds for clienthood

15. Primary diagnosis
16. Secondary diagnoses
17. Need for care at discharge/at the time of count
18. Decision on long-term care (yes/no)

Data on discharge from care

19. Day of discharge
20. Follow-up care
21. Code of the community providing follow-up care
22. Code extension for the community providing follow-up care

Other information

23. The community that has commissioned the outsourced services, and its code
24. The appropriate care place for the client is reported in the client census

Count of regular home-care clients: data are also collected on the following:

Data describing care register data and grounds for clienthood
1. Need for care at the time of count
2. Appropriate care place
3. Plan for services and care has been drafted (yes/no)

Additional data concerning home care

4. Factors that impact negatively on living

Services received in November

5. Home-help visits
6. Home-nursing visits
7. Joint visits (cannot be separated)
8. Day-hospital visits, day-care visits by older people to residential homes/service centres
9. Total number of service days
10. Total number of working hours
11. Support services (yes/no) and type of support services
12. Support for informal care (yes/no)
13. Other support (free of charge to municipalities) (yes/no)

8. REGULAR DATA SOURCES OF THE REGISTER, COMPILING THE REGISTER

The manual on submitting care notifications to the Care Registers for Social Welfare and Health Care includes instructions on:
- which service providers are obliged to submit information to the Register and 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 care notifications are annually compiled into the national Care Registers for Social Welfare and Health Care. The data are sent to the register controller primarily on floppy disks or CDs. Some of the notifications are sent on paper forms.

9. REGULAR DISCLOSURE OF REGISTER DATA

Register data are not disclosed in any identifiable formats.

10. LINKING THE REGISTER TO OTHER PERSONAL DATA FILES

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

11. ACCESS TO DATA, CONFIDENTIALITY

The data stored in the Register are confidential under the Act on the Statistical Service of the National Research and Development Centre for Welfare and Health (409/2001). However, statistical information and data stored in the Register can be disclosed, provided that any information classified as confidential has been removed and the data subjects cannot be identified.

12. NUMBER OF PERSONS STORED IN THE PERSONAL DATA FILE

Each year, the Care Register for Social Welfare receives more than 200 000 care notifications from some 1300 service providers, about 80 000 client-census notifications and approximately 140 000 discharge notifications. In 2008, the total number of people receiving services was about 140 000. The Count of Regular Home-Care Clients is compiled each year in November. It covers data on nearly 85 000 people and about 700 service providers.

13. 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.

14. RECTIFYING ERRONEOUS DATA

Once an error is detected in the Care Register, efforts are made to correct it in connection with the Register's normal compilation and maintenance procedures. Data suppliers themselves are usually asked to correct any errors or deficiencies detected in their data.

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