The Isaacus -Digital Health HUB closing event 1.11.2018 "Health data, public institutions, and innovation – Lessons learned from Finland" Ville Aula, PhD Researcher Data, Networks, and Society Department of Media & Communications

1. Health data, public
institutions, and innovation –
Lessons learned from Finland
Ville Aula
PhD Researcher
Data, Networks, and Society
Department of Media & Communications

2. Key issue:
Who decides who can use what data?
The role of public institutions in health data reform

3. Central dispute - The limits of data
“let the data
speak for itself”
(Mayer-Schonberger &
Cukier 2013, 14)
“data [--] do not exist
independently of the ideas,
techniques, technologies, people
and contexts that produce, process,
manage, analyse and store them”
(Kitchin 2014, 184)
Local DataBig & Open Data VS

4. Lesson 1 – We cannot look at data just as
a technical project
• ICT infrastructures
• Data practices and standards
• Mission and purpose
• Culture and discourse
• Regulation
• Collaborators and networks
Public institutions form
Data Regimes
Social Insurance
Institution KELA
Statistics Finland
National Institute of
Health and Welfare

5. Data
regimes
Reconfiguration and
legal changes
Tensions
Lesson 2 – Tensions emerge from legitimate
differences
• Legitimate differences between regimes
• Balancing perceived risks and benefits
• Public institutions both de facto and de jure arbiters of public
interest in their own fields

6. Tensions identified
• Who decides who can use what data?
Power to grant
access
• How is data produced and retained, and
how does this influence the data?
Data origins
• Who can use data and for what purposes?Purpose of use
• How is data processed, governed, and
disseminated in the new model?
Data
governance
• Is this the right way of advancing big
health data?
Alternative
solutions

7. • Stakeholders,
legislators, users, and
institutios all committed
to innovation, but
different versions of it
• ISAACUS and legal
reform started as
trailblazers, but soon
had to compete with
other health data
projects
Lesson 3 – Emerging themes and diverse
goals compete with ongoing efforts

8. Lesson 4 – Solve tensions with practical
collaboration
ISAACUS
pilot projects
Acted as test-beds for
collaboration and
integration
Produced tangible
outcomes that can be
scaled
Legal reform
Legal reform difficult
when data regimes
sophisticated and field in
flux
Government Enteprise
Architecture drafts as
testbed

9. Lesson 5 – Different modes of solving
problems in legal and ICT reconfiguration
”Only after
everyone agrees,
things can move
forward”
”By moving
forward, we get
everyone to agree”
Modelled after Latour 1987
• Ethics?
• Law?
• Institutional relations?
• ICT development?
• Data practices?
• Legal interpretations?

10. Ville Aula
PhD Researcher
v.v.aula@lse.ac.uk
• How do risks and benefits compare?
• When can we move forward in what
issues?