survey of attitudes to welfare data in finland

Survey of attitudes to welfare data in FinlandSummary2 November 2016

Abstract

Finns have a positive attitude towards the use of their health data

2

The Sitra survey on the attitudes of Finnish citizens towards the use of well-being data was conducted by a TNS Gallup Finland online panel in the summer of 2016. The survey examined topics related to the secondary use of personal social welfare and health data, such as citizen attitudes, trust and the general interest in the subject. The survey was taken by 2,019 people. Theage distribution of survey respondents in Finland was from 15 to 79. The survey data has been corrected so that the respondents’ gender, age and place of residence corresponds to the demographic data of the target population.

The survey suggests Finns are willing to anonymously submit their social welfare and health data as well as their genetic data for the purpose of service development and scientific research. Nearly half the respondents said they would allow the use of their anonymous social welfare, health and genetic data for the development of new forms of treatment and the more effective curing of diseases. Only 12% of the respondents said that using patient data for any purpose other than to treat the patients themselves should not be permitted.

Finns want information on the use of their social welfare and health data

The survey results show that citizens are interested in how their social welfare and health data is used and support its use forresearch and development purposes. However, they also want to be informed on the use of their social welfare and health data. Being able to see their own data and make any necessary corrections to it or even forbid its use were considered important factors.

Finns also want to be able to decide over the use of their own data through express consent. Nearly 90% of the respondents felt that it was important or quite important that the individual should be able to decide on what the data collected on themwould be used for, particularly if the data were to reveal the identity of the individual.

Authorities were considered to be trustworthy users of personal data

Finns have a high level of trust in authorities. Finns placed the greatest amount of trust in the police. A high level of trust is also placed in public social welfare and healthcare and in the Social Insurance Institution of Finland – Kela. This is especially emphasised when the reliability of different actors as users of the individual's data is assessed. A majority of the respondentsalso felt that it was important for an authority to oversee the use of data as well as the appropriateness of its use.

Survey content

3

Employment in social welfare and healthcare service organization

State of health and wellbeing

Possible chronic illnesses

Use of social and health services

Participation in surveys

Assessing the reliability of different actors

Trust in the appropriate use of personal data

How private various data is considered

Assessment of the principles for the use of personal health data

Authorizing the use of unidentifiable data for different purposes

Monitoring of own physical activities

Authorizing the use of activity data for different purposes

Use of data combined with health and patient records for the purpose of developing the field of medicine

Allowing professionals to view social and health records

Who should have access to social and health data outside a service situation

Importance of various possibilities of data use

Trust in data use in different situations, when the user is:

- The authorities

- Organizations in the health and social sector

- Academic researchers and universities

- Pharmaceutical and health technology companies

1. Background data 2. Reliability of different actors, trust in the correct use of data and privacy of data

3. Monitoring of physical activity and use of data for different purposes

4. Attitudes towards data use and trust in data use for different purposes

Surveythemes

Link to summary

http://www.slideshare.net/SitraHyvinvointi/finns-have-a-positive-attitude-towards-the-use-of-their-wellbeing-data-67724066

http://www.slideshare.net/SitraHyvinvointi/finns-have-a-positive-attitude-towards-the-use-of-their-wellbeing-data-67724066

4

TrustPrivacy of various dataPrinciples of data use Authorising the use of an individual’s unidentifiable data

Reliability of different actors

5

Finns placed the greatest amount of trust in the police. 86% of respondentsfind the police very or rather reliable.

Respondents also placed a high level of trust in universities and register and statistics authorities. Private and public social and health services ranked similarly well. The Social Insurance Institution of Finland Kela is also deemed reliable by over 60 % of respondents.

Internet services and pharmaceutical and insurance companies were deemed the most unreliable.

36

18

19

14

14

16

11

4

4

4

3

50

57

52

58

58

53

47

36

39

29

22

7

15

17

18

17

19

25

30

30

32

36

2

7

6

5

3

3

5

22

5

5

4

2

2

4

5

7

7

8

6

17

22

26

1

1

2

1

1

2

4

1

6

8

9

4,20

3,95

3,85

3,81

3,77

3,76

3,56

3,46

3,20

2,98

2,81

0% 20% 40% 60% 80% 100%

The police

Universities

Register and statistics authorities

Private social welfare or healthcare

Public social welfare or healthcare

Kela, the Finnish SocialInsurance Institution

Associations in the social or

health sector

Health technology companies

Insurance companies

Pharmaceutical companies

Internet services

Very reliable (5) Rather reliable (4)

Not reliable or unreliable (3) I don't know

Rather unreliable (2) Very unreliable (1)

How reliable do you find the following actors?

TOTAL (n=2019)

mean

Reliability of different actors– According to gender

6

Both genders have rather similar views on the reliability of authorities and companies. Women generally place slightly more trust in the various actors than men.

4,20

3,95

3,85

3,81

3,77

3,76

3,56

3,46

3,20

2,98

2,81

1,0 2,0 3,0 4,0 5,0

The police

Universities

Register and statistics

authorities




Associations in the social orhealth sector


Insurance companies


Internet services

TOTAL (n=2019) Woman (n=1001) Man (n=1018)


TOTAL (n=2019)

GENDER:

Very unreliable (1) Very reliable (5)

Reliability of different actors– According to gender and age

7

Respondents over 65 are the most trusting. Men aged 30-45 have the least trust in different actors, including the police, universities and register and statistics authorities.

4,20

3,95

3,85

3,81

3,77

3,76

3,56

3,46

3,20

2,98

2,81

1,0 2,0 3,0 4,0 5,0

The police

Universities


authorities






Insurance companies


Internet services

TOTAL (n=2019) Woman 15-29 y. (n=240) Woman 30-45 y. (n=259)

Woman 46-64 y. (n=320) Woman 65- y. (n=183) Man 15-29 y. (n=248)

Man 30-45 y. (n=275) Man 46-64 y. (n=252) Man 65- y. (n=242)


TOTAL (n=2019)

GENDER & AGE:


Reliability of different actors– According to place of residence and education

8

Respondents who have an academic degree place more trust in public authorities.

4,20

3,95

3,85

3,81

3,77

3,76

3,56

3,46

3,20

2,98

2,81

1,0 2,0 3,0 4,0 5,0

The police

Universities


authorities






Insurance companies


Internet services

TOTAL (n=2019) Helsinki area (n=436)Other city/town (n=1161) Countryside (n=421)Basic education (n=922) Other education (n=765)Academic degree (n=320)


TOTAL (n=2019)

PLACE OF RESIDENCE:


EDUCATION:

Trust in the appropriate use of data

9

The police is deemed the most reliable institution when it comes to the use of personal data, followed by public social welfare and healthcare and the Social Insurance Institution of Finland (Kela).

Respondents find that private social welfare and healthcare is the most reliable actor in the private sector, ranking it slightly higher than universities. Internet services are considered the most unreliable data users.

37

23

24

22

19

14

10

9

4

5

3

43

50

46

43

46

41

39

33

24

24

11

11

16

18

20

19

26

27

31

32

32

23

4

4

4

7

7

11

6

10

20

10

7

3

5

5

5

7

6

12

11

15

19

29

2

2

2

3

2

2

5

5

4

11

28

4,13

3,91

3,90

3,83

3,77

3,68

3,39

3,34

3,11

2,94

2,26

0% 20% 40% 60% 80% 100%

The police



Register and statistics authorities


Universities

Insurance companies




Internet services

I have complete trust (5) I have fair trust (4)

Neutral (3) I don't know

I have fairly little trust (2) I have very little trust (1)

Do you trust that the following authorities will use your data appropriately, safely and

taking into account your privacy?TOTAL (n=2019)

mean

Reliability of different actors and trust in the appropriate use of data, combined results

10

Statistics authorities, associations, health technology companies and especially internet services rank lower as reliable data users, compared to their general reliability score.

By contrast, the Social Insurance Institution of Finland (Kela), public social and healthcare institutions as well as insurance companies rank higher as reliable data users, compared to their general reliability score.

The police

Kela, the Finnish

Social Insurance

Institution Register and

statistics

authorities

Universities

Associations in the

social or health

sector

Public social

welfare or health

care

Private social

welfare or health

care

Pharmaceutical

companies

Insurance

companies

Internet services

Health technology

companies

2,0

2,5

3,0

3,5

4,0

4,5

2,0 2,5 3,0 3,5 4,0 4,5

I have complete trust (5)Do you trust that the following authorities will use your data appropriately, safely and taking into account your privacy?

TOTAL (n=2019)


I have complete

trust (5)

I have very little

trust (1)


Trust in the appropriate use of data– According to gender

11

Women have slightly more trust in the correct use of data than men.

4,13

3,91

3,90

3,83

3,77

3,68

3,39

3,34

3,11

2,94

2,26

1,0 2,0 3,0 4,0 5,0

The police


Kela, the Finnish Social

Insurance Institution

Register and statisticsauthorities


Universities

Insurance companies


health sector



Internet services


Do you trust that the following authorities will use your data appropriately, safely and taking

into account your privacy?

TOTAL (n=2019)

GENDER:

I have very little trust (1) I have complete trust (5)

Trust in the appropriate use of data– According to gender and age

12

Men aged 30-45 place the least amount of trust in different actors.Compared to other respondent groups, women aged 15-45 have more trust in private social and healthcare when it comes to the appropriate use of data.

4,13

3,91

3,90

3,83

3,77

3,68

3,39

3,34

3,11

2,94

2,26

1,0 2,0 3,0 4,0 5,0

The police






Universities

Insurance companies


health sector



Internet services






TOTAL (n=2019)

GENDER & AGE:


Trust in the appropriate use of data– According to place of residence and education

13

4,13

3,91

3,90

3,83

3,77

3,68

3,39

3,34

3,11

2,94

2,26

1,0 2,0 3,0 4,0 5,0

The police






Universities

Insurance companies


health sector



Internet services




TOTAL (n=2019) I have very little trust (1) I have complete trust (5)

PLACE OF RESIDENCE:

EDUCATION:

Trust in the appropriate use of data– According to use of social and health services

14

Respondents who frequently use social and health services have more trust in authorities using their data appropriately.

4,13

3,91

3,90

3,83

3,77

3,68

3,39

3,34

3,11

2,94

2,26

1,0 2,0 3,0 4,0 5,0

The police






Universities

Insurance companies


health sector



Internet services

TOTAL (n=2019) Not once (n=275)

1-2 times (n=810) 3-6 times (n=569)

More than 6 times (n=327)



TOTAL (n=2019)

USE OF S/H SERVICES IN PAST YEAR:


Privacy of various data

15

When it comes to personal data, respondents find that one’s bank account number and balance, health and patient records and social security number are the most private. These are followed by text and instant messages, internet browser history and location and travel data. Grocery shopping data and social media updates are considered the least private.

82

74

73

63

57

54

36

29

25

27

24

18

13

8

12

19

19

26

32

28

42

43

47

43

41

42

31

32

2

1

1

4

2

5

3

3

2

2

1

4

8

3

3

4

4

6

8

11

16

20

22

24

28

30

32

40

1

1

1

1

2

2

4

5

4

4

6

6

17

16

3,79

3,69

3,67

3,57

3,46

3,41

3,14

2,99

2,96

2,95

2,83

2,75

2,43

2,34

0% 20% 40% 60% 80% 100%

Bank account number & balance

Health/patient data

Social security number

Social service data

Prescription medication data

genetic data

Text or instant messages

Internet browsing history

Location or travel data

Address

Phone number

Self-tracked wellbeing data

Social media updates

Grocery shopping history

Very private (4) Rather private (3) I don't know

Not that private (2) Not private at all (1)

How private do you think the following information is?

TOTAL (n=2019)mean

Principles for the use of personal social and health data

16

All the listed principles were considered to be important. The highest rated were the possibility to view one’s own data, and the option to correct possible errors in it.

Respondents deem using the data for a common good cause the least important. It has significance, but is not as crucial as other listed principles.

72

68

63

64

60

34

22

26

30

27

33

49

2

2

2

2

3

6

4

3

4

6

3

10

1

1

1

1

2

3,68

3,66

3,59

3,57

3,56

3,21

0% 20% 40% 60% 80% 100%

I can view my own data

I have the possibility to makecorrections to possible errors in my

data

I can see which purpose my data isused for and who uses it

I can forbid the use of my data

Authorities oversee the appropriateuse of my data

My data is used for a common

good, for instance improving

treatments and curing diseases.

Very important (4) Rather important (3)

I don't know Not that important (2)

Not important at all (1)

Regarding the use of your personal social and healthcare data, how important do you find

the following claims?

TOTAL (n=2019)

mean

Principles for the use of personal health and social data– Gender and age

17

Having control over their own social and health data is more important for women than for men.

The difference is most notable between men aged 30-45-years and women aged 46-64 years.

3,68

3,66

3,59

3,57

3,56

3,21

1,0 1,5 2,0 2,5 3,0 3,5 4,0


I have the possibility to make

corrections to possible errors in my

data

I can see which purpose my data isused for and who uses it


Authorities oversee the appropriate

use of my data

My data is used for a common

good, for instance improving

treatments and curing diseases.




Regarding the use of your personal social and healthcare data, how important do you find

the following claims?

TOTAL (n=2019)

GENDER & AGE:

Not important at all (1) Very important (4)

Importance of various claims

18

When respondents were asked to name 1-2 most significant claims, the right to forbid the use of one’s own data arises as the second most important principle.Also, having a public authority to oversee the use of data gains importance, compared to the general assessment of importance.

41

36

34

32

28

15

0

3

0% 10% 20% 30% 40% 50% 60%



I can see which purpose my data is

used for and who uses it


use of my data



data

My data is used for a common good,

for instance improving treatments and

curing diseases

Other

I don't know

TOTAL

(n=2019)

Which of these is the most important to you? Please mark one or two most important claims.

TOTAL (n=2019)

Importance of various claims– According to gender and age

19

Women aged 15-45 are particularly concerned about what purposes their data is used for, and who uses it.Men aged over 64 do not find it as important. Their most important priority is the option to correct possible errors in their data.

41

36

34

32

28

15

0

3

0% 10% 20% 30% 40% 50% 60%



I can see which purpose my data is

used for and who uses it


use of my data



data

My data is used for a common good,

for instance improving treatments and

curing diseases

Other

I don't know




Which of these is the most important to you? Please mark one or two most important claims.

TOTAL (n=2019)

GENDER & AGE:

Allowing the use of unidentifiable social and health data for different purposes

20

Respondents are willing to allow unidentifiable data to be used in the development of social and healthcare systems and in scientific research.

However, opinions are divided when it comes to handing out data to insurance companies in order to receive discounts on policies.Almost a fifth of Finns would not allow their data to be used for this purpose.

44

39

37

35

35

33

32

18

46

51

51

50

54

54

55

59

5

5

5

6

5

6

5

7

5

5

7

9

6

7

7

17

0% 20% 40% 60% 80% 100%

Developing new forms of

treatment and the more effective

curing of diseases

Identifying possible personal

health risks

Identifying possible health risks

relating to my place of residence

Developing new (highly selective)

medications

Improving the efficiency and

quality of the social welfare

/health care system

Developing new equipment or

services in social or health care

Other scientific research

Insurance company use, e.g. in

order to receive discounts on my

insurance policies

Yes, I would allow my data to be used freely

My data could be used, but with my specific permission only

I don't know

I would not allow my data to be used

Would you allow your unidentifiable social and healthcare data to be used and combined

for the following purposes?TOTAL (n=2019)

Allowing the use of unidentifiable social and health data for different purposes – Gender and age

21

Men aged 30-45 are more critical about allowing the use of their unidentifiable data than men aged over 64.

44

39

37

35

35

33

32

18

0% 10% 20% 30% 40% 50% 60% 70% 80%



curing of diseases


health risks




medications



/health care system






insurance policies




Would you allow your unidentifiable social and healthcare data to be used and combined for

the following purposes?

TOTAL (n=2019)

GENDER & AGE:


Allowing the use of unidentifiable social and health data for different purposes – Place of residence and education

22

Respondents who are highly educated have a more positive attitude towards allowing the use of their unidentifiable data.

44

39

37

35

35

33

32

18

0% 10% 20% 30% 40% 50% 60% 70% 80%



curing of diseases


health risks




medications



/health care system






insurance policies


Would you allow your unidentifiable social and healthcare data to be used and combined for

the following purposes?

TOTAL (n=2019)


PLACE OF RESIDENCE:

EDUCATION:

Allowing the use of unidentifiable genetic data for different purposes

23

The majority of Finns are willing to allow the use of their genetic data for all other listed purposes except insurance company use (a fourth are opposed to this).

45

41

39

36

34

18

45

48

48

49

52

51

5

5

5

6

6

7

6

6

8

9

8

24

0% 20% 40% 60% 80% 100%

Improving treatments and curing

of diseases


health risks

Developing newdrugs/medications

Developing new equipment orservices in social or health care




insurance policies



I don't know


Would you allow your unidentifiable genetic data to be used for the following purposes?

TOTAL (n=2019)

Allowing the use of unidentifiable genetic data for different purposes – Gender and age

24

Men aged 15-45 are more critical about allowing the use of their unidentifiable genetic data than men aged over 64.

45

41

39

36

34

18

0% 10% 20% 30% 40% 50% 60% 70% 80%

Improving treatments andcuring of diseases

Identifying possible personalhealth risks





Insurance company use, e.g. inorder to receive discounts on my

insurance policies





TOTAL (n=2019)

GENDER & AGE:


Allowing the use of unidentifiable genetic data for different purposes – Place of residence and education

25

45

41

39

36

34

18

0% 10% 20% 30% 40% 50% 60% 70% 80%








insurance policies



TOTAL (n=2019)


PLACE OF RESIDENCE:

EDUCATION:

26

Trust

Finns have a high level of trust in authorities. Finns placed the greatest

amount of trust in the police (86%). A high level of trust is also placed in

universities and register and statistics authorities. Private and public

social and healthcare is considered to be as reliable as them, and slightly

less reliable than universities. The least amount of trust is placed in

internet services and pharmaceutical and insurance companies.

Women and men have rather similar views on the reliability of authorities.

Women have slightly more trust in the correct use of data than men.

Respondents with higher education (academic degree) have more trust in

public authorities. The police is deemed the most reliable institution also

when it comes to the use of personal data, followed by public social and

healthcare and the Social Insurance Institution of Finland (Kela).

Respondents find that private social and healthcare is the most reliable

actor in the private sector, ranking slightly higher than universities.

Internet services are considered to be the least reliable users of data.

Men aged 30-45 have the least amount of trust in different actors.

Compared to other respondent groups, women aged 15-45 have more

trust in private social and healthcare when it comes to the appropriate use

of data.

Personal dataWhen it comes to personal data,

respondents find that one’s bank account

number and balance, health and patient

records and social security number are the

most private. These are followed by text

and instant messages, internet browser

history and location and travel data.

Grocery shopping data and social media

updates are considered the least personal.

Principles of data useThe most important principles are the ability to view

one’s own data, and the option to correct possible

errors in it. Respondents deem using the data for a

common good cause the least important. It has

significance, but is not as crucial as other listed

principles.

Women, especially those aged 15-45, are particularly

concerned about what purposes their data is used for,

and who uses it.

Men aged over 64 do not find it as important. Their

most important priority is the option to correct possible

errors in one’s data.

Allowing the use of unidentifiable data for different purposesRespondents are willing to allow

unidentifiable data to be used in the

development of social and healthcare

systems and in scientific research.

However, opinions are divided when it

comes to handing out data to insurance

companies in order to receive discounts.

Almost a fifth of Finns would not allow their

data to be used for this purpose.

Men are slightly more positive about

allowing their data to be used for system

development and scientific research.

The majority of Finns are willing to allow the

use of their genetic data for all other

purposes except insurance company use (a

quarter are opposed to this).

Men aged 15-45 are more critical about

allowing the use of their unidentifiable

genetic data than men aged over 64.

Respondents who use social and health

services are more willing to allow the use of

their unidentifiable genetic data for different

purposes.

27

Monitoring physical activityThe use of activity data for different purposesAttitudes towards combining dataAttitudes towards access to data

Monitoring one’s own physical activity

28

A fifth of respondents use a device daily to track their physical activity.

Yes

I don't know

No

21

2

77

Do you use any activity tracker, smartphone or other device to monitor your daily

activity?

TOTAL (n=2019)

%

Allowing the use of activity data for different purposes

29

41

41

40

38

35

27

47

48

46

49

51

52

4

3

4

4

5

3

8

8

11

9

8

18

0% 20% 40% 60% 80% 100%

Improving treatments and curing

of diseases


health risks


Developing new equipment orservices in social or health care




insurance policies



I don't know


Would you allow your unidentifiable activity data to be used for the following purposes?

TOTAL (n=423)

Allowing the use of activity data for different purposes – According to gender and age

30

When it comes to the willingness to submit one’s activity data, there is a clear difference between men and women aged over 64.Also, men aged 30-45 object more strongly than other male respondents.

41

41

40

38

35

27

0% 10% 20% 30% 40% 50% 60% 70% 80%








insurance policies




Would you allow your unidentifiable activity data to be used for the following purposes?

TOTAL (n=423)

GENDER & AGE:


Use of unidentifiable data combined with health and patient records, for the purpose of developing the field of medicine

31

Respondents feel the most positive about submitting data relating to alcohol consumption, place of residence and physical activity, when this information is combined with unidentifiable health and patient data. Respondents are most opposed to submitting social media and browser history data.

31

29

25

25

25

23

12

10

48

54

47

51

55

50

42

38

5

4

6

6

5

5

7

7

16

14

23

18

15

22

39

45

0% 20% 40% 60% 80% 100%

Data relating to alcohol

consumption

Data relating to place ofresidence


Activity data

Genetic data

Travel data

Data relating to social media use

Internet browser history



I don't know


Would you allow your following unidentifiable data to be used for the purpose of

developing the field of medicine, combined with your health and patient records?TOTAL (n=2019)

Use of unidentifiable data combined with health and patient records, for the purpose of developing the field of medicine – According to gender and age

32

31

29

25

25

25

23

12

10

0% 10% 20% 30% 40% 50% 60%

Data relating to alcoholconsumption

Data relating to place of

residence


Activity data

Genetic data

Travel data

Data relating to social media use

Internet browser history




Would you allow your following unidentifiable data to be used for the purpose of developing

the field of medicine, combined with your health and patient records?TOTAL (n=2019)

GENDER & AGE:


Access to social and health data outside a service situation

33

More than a fourth of Finns think that they alone should have access to their social and health data outside a personal service situation, unless they specifically authorize it.

28

65

15

9

5

0% 20% 40% 60% 80% 100%

Only me

In addition to myself, the

organization treating me (e.g.

hospital or private doctor's practice)

In addition to myself, stateauthorities (e.g. Kela)

In addition to myself, local

authorities (e.g. the Department of

Social Services and Health Care)

I don't know

TOTAL (n=2019)

Outside a personal service situation and without your express consent, who should have access to your social and health data? (E.g. patient records, case histories, laboratory results.)

TOTAL (n=2019)

The older the respondents, the more willing they are to allow the treating institution to access their social and health data, even without express consent. This applies for both genders.

34

Monitoring of physical activityAbout a fifth of Finns (21%) aged between

15 and 79 use a device daily to track their

physical activity.

Using an activity tracker is most common in

respondents between the ages of 15 and 29

(women 32% and men 28%). Women over

the age of 64 are the least active

respondent group when it comes to

monitoring physical activity (10%), whereas

the number for men over the age of 64 is

16%.

Use of activity data for different purposesFinns are positive about allowing their unidentifiable activity data in the development of healthcare institutions. The most willing respondent group are men over the age of 65.

Attitudes towards combining dataRespondents were asked about their

willingness to submit their own unidentifiable

data for the purpose of developing the field of

medicine. They feel the most positive about

submitting data relating to alcohol

consumption, place of residence and physical

activity, when this information is combined with

unidentifiable health and patient data.

Submitting internet browser history and social

media information gets the most opposition.

Attitudes towards access to dataOver a quarter of Finns think that they alone

should have access to their social and health

data outside a personal service situation,

unless they specifically authorise it.

However, the older the respondents, the more

willing they are to allow the treating institution

to access their social and health data, even

without express consent.

35

Attitudes towards the use of dataTrust in different actors measured with various indicators

Respondents were asked to determine the importance of the following claims

36

”My doctor has access to the most comprehensive information possible about how patients like me have been treated in Finland, and what the results of their treatment were.

The effectiveness of treatments is monitored nationally, so that patients are in an equal position and treatments can be directed to patients who benefit the most from them.

Existing data is used effectively in the development of services and healthcare.

We should increase awareness about how health data can be utilised (in research, for example).

I should be able to decide what data collected on me is used for, even if the data does not reveal my identity.

I should be able to decide what data collected on me is used for, if the data reveals my identity.

Using patient data for any purpose other than to treat the patients themselves should not be permitted.”

Attitudes towards the use of data etc.

37

Respondents find it important that existing data is used effectively in the development of services and in ensuring that patients get equal care and treatment.However, when it comes to information which reveals a person’s identity, respondents are not willing to submit it without permission.

60

46

42

41

33

30

12

27

43

46

46

51

40

25

4

5

5

6

7

6

12

7

6

6

6

9

20

28

1

1

1

1

1

4

22

3,54

3,40

3,35

3,34

3,22

3,02

2,32

0% 20% 40% 60% 80% 100%

I should be able to decide what the data

collected on me is used for, if the datawere to reveal my identity

My doctor has access to the most

comprehensive information possible abouthow patients like me have been treated…

Existing data is utilized effectively in the

development of services and healthcare

The effectiveness of treatments is

monitored nationally, patients in an equalposition & right treatm. to right patients

We should increase awareness about how

health data can be utilized (in e.g.research)


collected on me is used for, even if thedata were not to reveal my identity

Using patient data for any purpose other

than to treat the patients themselvesshould not be permitted

Very important (4) Rather important (3)

I don't know Not that important (2)

Not important at all (1)

How important do youn find the following claims?

TOTAL (n=2019)

mean

Attitudes towards the use of data etc.– According to gender

38

Women find almost all claims more important than men do.Compared to male respondents, women find it more important that they can decide how their own health data is used, in case it reveals their identity. Women also find it important that the effectiveness of treatments is monitored nationally to ensure the equality of all patients.

60

46

42

41

33

30

12

0% 20% 40% 60% 80% 100%


collected on me is used for, if the datawere to reveal my identity

My doctor has access to the most

comprehensive information possible abouthow patients like me have been treated…

Existing data is utilized effectively in the

development of services and healthcare

The effectiveness of treatments is

monitored nationally, patients in an equalposition & right treatm. to right patients

We should increase awareness about how

health data can be utilized (in e.g.research)


collected on me is used for, even if thedata were not to reveal my identity

Using patient data for any purpose other

than to treat the patients themselvesshould not be permitted


How important do youn find the following claims?

TOTAL (n=2019)

GENDER:

Very important (4)

Attitudes towards the use of data etc.

39

Authorities and social and health organizations are deemed more reliable data users than pharmaceutical or health technology companies or academic researchers and universities.

24

27

17

10

21

25

15

10

27

24

16

11

21

21

15

11

52

52

44

32

51

51

39

28

46

48

37

31

47

48

38

29

13

12

22

26

15

13

26

28

14

14

24

27

17

17

24

27

5

5

8

8

5

5

8

9

4

5

8

8

5

5

8

9

5

4

7

16

6

4

9

18

7

7

10

16

7

7

11

17

2

1

2

7

2

2

3

8

3

3

4

8

2

2

4

8

3,95

4,05

3,72

3,24

3,89

3,98

3,57

3,16

3,90

3,88

3,56

3,23

3,82

3,83

3,54

3,19

0% 20% 40% 60% 80% 100%

An authority

A social welfare/health care organisation

Academic researchers and universities

Pharmaceutical / health tech. companies

An authority




An authority




An authority




I have complete trust (5) I have fair trust (4)

Neutral (3) I don't know

I have fairly little trust (2) I have very little trust (1)

How much trust do you have in the following regarding the use of social and health data?

When the user is...

My data is used for appropriate purposesmean

My data is used for the benefit of me or my family

My data is stored safely

The data stored about me is exact and correct

40

Attitudes towards the use of dataRespondents found it important that existing

data can be used to improve treatments or

services, and to ensure the equal treatment of

all patients. However, they do not wish to

submit data that can reveal their identity

without specific permission.

Women find almost all claims more important

than men do.

Compared to male respondents, women find it

more important that they can decide how their

own health data is used, in case it reveals

their identity. Women also find it important that

the effectiveness of treatments is monitored

nationally to ensure the equality of all patients.

Trust in different actors measured with various indicatorsRespondents were asked if they trust different

actors with the following: that their data is used

appropriately, that it is used to benefit them or their

family, and that the data is exact and correct.

Authorities and social and health organisations

are deemed more reliable data users than

pharmaceutical or health technology companies,

or than even academic researchers or universities.

Social and health organisations treating the

respondent also rank highly as reliable data users.

Some 10 to 15% of Finns do not consider

researchers or universities to be reliable social/

healthcare data users.

Between 23 and 36% of Finns do not consider

pharmaceutical or health technology companies to

be reliable social or healthcare data users. These

companies received the lowest rankings when it

came to appropriateness and exactitude of data

and using the data to benefit people.

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survey of attitudes to welfare data in finland

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