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TitlePublic Acceptability of Data Sharing Between the Public, Private and Third Sectors for Research
File Size1.5 MB
Total Pages130
Document Text Contents
Page 1









Public Acceptability of Data Sharing

Between the Public, Private and

Third Sectors for Research Purposes

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2012 research, that public bodies do not always do enough with the
information they have and ought to be more accountable in this regard.

What are they going to do with the information once they have got it
because the Government seem to have a lot of information on you but

(Male, youngest age group, Aberdeen)

It's okay sharing [but] it's not enough. [The] outcome is more important.
(Male, middle age group, Oban)

The private sector

5.15 As already mentioned, private sector involvement in data sharing was a
contentious issue. There was a great deal of concern that private companies
would sell data to each other for mutual benefit – a practice that was seen as
already widespread – although this concern did lessen when participants were
reminded that the data would be anonymised so individually targeted sales or
marketing campaigns could not be based on such data. More generally, there
was strong spontaneous opposition to data being used by the private sector
for the sole purpose of profit maximisation. This is not to say that participants
were entirely opposed to private sector organisations accessing data, or that
no level of profit was acceptable. Rather, the consensus was that private
sector access to (anonymised) personal data should only be granted where
this is likely to result in some form of public benefit.

I think when it's being done for services; say, social work, to target
where you need to do some kind of youth outreach work, that's fine
and that sits comfortable with me, but if that then becomes, okay,
supermarkets can find out that in this area, there is loads of young
families with young children, and end up using that information to do a

comfortably with me.
(Male, middle age group, Aberdeen)

I think you maybe get concerned if you think that your information is
going to earn somebody else a profit that's not maybe going to benefit
society as a whole
me, anonymised, if I thought it would help other people in research but
my expectation would be that services to me would be improved
because of it.

(Female, older age group, Aberdeen)

5.16 As the above comments serve to illustrate, public benefit continued to be

conceived of primarily in terms of improvements to local services, local areas
or public health, rather than individual-level or direct financial benefits.
However, there was some unprompted suggestion that the private sector
should be required to pay for access to data and/or to share any profits
resulting from research with the relevant data owner(s), so as to generate
funds that can be reinvested towards the public good. Invariably, these

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suggestions met with strong support from others in the group and laid the
foundation for later, prompted discussions of benefit-sharing.

Development is such a huge part of the process of making [a] product;
I would say the most important, so if [companies] want to create
something that will generate a profit, they need the information, so I
think they really should pay for the information.

(Female, oldest age group, Edinburgh)

[Male 1:]
should have to pay to get access to that information and pay quite a

[Male 2:] Then money should go back in

[Male 1:] Exactly, yes, feed back into the services.

(Middle age group, Aberdeen)

There should be some criteria [for] sharing the profit if they are going to
make these profits.

(Male, middle age group, Oban)

5.17 In terms of the specific types of private sector entity that participants were

invited to consider, pharmaceutical companies were the only type that the
great majority felt should be able to access data from other sectors.
Ultimately, this reflected a view that research by pharmaceutical companies
contributed towards improved understanding of diseases and conditions, and
to new drugs and treatments. At the same time, several participants
expressed unease at the scale of profits made by pharmaceutical companies
and it was this unease that prompted the spontaneous suggestions for profit
sharing, mentioned above.

5.18 In contrast with views on pharmaceutical companies, there was overwhelming
opposition to banks, other financial institutions, internet service providers and
social media companies being able to access data from other sources.
Participants expressed strong distrust of these entities – banks and other
financial institutions because of their perceived role in the financial crisis; and
internet service and social media companies because of personal or proxy
experience of online fraud and a related perception that the online sphere is
―impossible to police‖. There was a widely held view that personal information,
even if anonymised, would not be secure in the hands of these types of
company and, as such, ought not to be shared with them.

5.19 Two other categories of company; supermarkets and other retailers, and
security and surveillance firms, divided opinion at each of the events, although
for different reasons.

5.20 Supermarkets and other retailers were commonly perceived to be purely profit
driven, and this led to many participants rejecting outright the idea of their

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Q5 Is there anything you would have liked to have said but didn’t?

Q6 Did this event change your views about any aspect of data sharing between public, private
and third sector organisations?

Yes No

If yes, please tell us how your views have changed? PLEASE WRITE IN BELOW

Q7 Thinking about everything that has been discussed today, what do you think are the most
important issues to consider or resolve regarding the sharing of data between public, private
and third sector organisations?

Q8 Did you find today’s venue suitable or not suitable?

Suitable Not suitable Don’t know

If you found the venue unsuitable, why do you think it was not suitable? PLEASE WRITE IN

If you would like a copy of the final report, please write your email address or, if you don’t
have an email address, your postal address in the box below:

Thank you very much for the feedback.
Please hand your completed form to one of the moderators.

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Social Research series
ISSN 2045-6964
ISBN 978-1-78256-953-4

web only publication

APS Group Scotland
DPPAS14736 (10/13)

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