Survey of attitudes to welfare data in Finland

Survey of attitudes to welfare
data in Finland
Summary
2 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. The
age 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 for
research 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 them
would 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 respondents
also 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
Survey
themes
Link to summary
http://www.slideshare.net/SitraHyvinvointi/finns-have-a-positive-attitude-towards-the-use-of-their-wellbeing-data-67724066

4
Trust
Privacy of various data
Principles 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 respondents
find 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 health
care
Public social welfare or health
care
Kela, the Finnish Social
Insurance 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

– 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
care
care
health sector
Insurance companies
Internet services
TOTAL (n=2019) Woman (n=1001) Man (n=1018)
TOTAL (n=2019)
GENDER:
Very unreliable (1) Very reliable (5)

– 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
care
care
health sector
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:

– 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
care
care
health sector
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
(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
care
Register and statistics authorities
care
Universities
Insurance companies
health sector
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
(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)

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
care
authorities
care
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)

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
care
authorities
care
Universities
Insurance companies
health sector
Internet services
TOTAL (n=2019)
GENDER & AGE:

– 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
care
authorities
care
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:

– 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
care
authorities
care
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 make
corrections to possible errors in my
data
I can see which purpose my data is
used for and who uses it
I can forbid the use of my data
Authorities oversee the appropriate
use 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
data
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%
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
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%
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)

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:

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 new
drugs/medications
insurance policies
I don't know
Would you allow your unidentifiable genetic data to be used for the following purposes?
TOTAL (n=2019)

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 and
curing of diseases
health risks
Developing new
drugs/medications
insurance policies
TOTAL (n=2019)
GENDER & AGE:

different purposes – Place of residence and education
25
45
41
39
36
34
18
0% 10% 20% 30% 40% 50% 60% 70% 80%
curing of diseases
health risks
Developing new
drugs/medications
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 data
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 personal.
Principles of data use
The 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 purposes
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.
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 activity
The use of activity data for different purposes
Attitudes towards combining data
Attitudes 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
drugs/medications
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
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%
curing of diseases
health risks
Developing new
drugs/medications
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 of
residence
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
32
31
29
25
25
25
23
12
10
0% 10% 20% 30% 40% 50% 60%
Data relating to alcohol
consumption
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, state
authorities (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
activity
About 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 purposes
Finns 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
data
Respondents 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
data
Over 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 data
Trust 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 data
were to reveal my identity
My doctor has access to the most
comprehensive information possible about
how 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 equal
position & 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 the
data were not to reveal my identity
Using patient data for any purpose other
than to treat the patients themselves
should 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

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 data
were to reveal my identity
My doctor has access to the most
comprehensive information possible about
how 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 equal
position & 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 the
data were not to reveal my identity
Using patient data for any purpose other
than to treat the patients themselves
should not be permitted
How important do youn find the following claims?
TOTAL (n=2019)
GENDER:
Very important (4)

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 purposes
mean
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
data
Respondents 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 indicators
Respondents 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.

sitra.fi
Facebook.com/SitraFund
@SitraFund
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Survey of attitudes to welfare data in Finland

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