The document discusses ownership and management of consumers' health data within the context of big data, highlighting the tensions between consumer privacy, data sharing, and the needs of healthcare providers, government, and researchers. Key issues include consumer rights to control their data, the need for coordinated care, and the demands for improved technology to access comprehensive health records. It concludes by outlining necessary steps towards better governance and utilization of health data for enhanced care outcomes.

1. WHO OWNS YOUR BIG DATA?
Who owns consumers’ health data?
Health Care and Social Media
Summit 2015
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2. Who owns consumers’ health data?
Big data : what are we talking about?
- ‘Big data’ = large, complex datasets and the associated
advances in technology and analytics
- Covers many different types of data:
- Routinely collected clinical data
- eHealth records
- Claims data
- Genomics data
- Aggregated population health data
- Clinical trial results
- Data from automated sensors and smart devices
- Data from social media
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3. Who owns consumers’ health data?
Key issues
- Consumers demand and expect coordination of health
services, which may involve broad sharing of health
information
- Consumers are keenly aware of privacy risks and want
the ability to control of their data
- Both the health sector and government want to move into
an improved technology landscape, but often lack
resources
- Clinicians and government have a need and desire for
evidenced-based practices to improve health outcomes, but
data are often fragmented and incomplete
- Researchers seeking to better understand health issues
and interventions are often blocked by arcane privacy laws
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4. Who owns consumers’ health data?
Key questions
- What are the obligations to keep consumers informed of
the use of their health information?
- What rights do consumers have to control when and how
their health information is used?
- Who ultimately has responsibility as “data custodians” in
an environment where information can be widely shared?
- What rights do third-parties have to access consumers’
health information, and how engaged should consumers be
in that process?
- Are there benefits to using consumers’ health information in
non-clinical settings, and how are the risks managed?
- What is the place for patient-reported outcome data?
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5. Who owns consumers’ health data?
The consumer demand – better care
- Consumers expect their health care providers to have the
ability to work together on providing best-possible
outcomes
- Models of care are being designed and implemented to
meet this demand, considering whole-of-person health
- Consumers are wary of having any of their health
providers out of the loop on the state of their care
- Consumers are comfortable with having large volumes of
data at their fingertips (eg, financial, social, academic,
etc.), and are coming to expect that in their health care as
well
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6. Who owns consumers’ health data?
The consumer demand – robust privacy
- Consumers own their information
- A person’s health data is the most personal information that
can be shared, and it ought to be robustly protected
- Consumers expect that when they give consent to share
their health information, they are being informed of all
possible risks to make a good decision
- Consumers who have complex conditions and care
requirements will need their information accessed by
multiple providers, but may not always be comfortable
with over-broad sharing
- The better engaged the consumer is by and with their
clinical team, the more their risk perceptions may diminish
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7. Who owns consumers’ health data?
The sector demand – better technology
- Clinicians cannot provide best-possible care without being
fully informed
- Clinicians of all professions have an interest in having up-
to-date, relevant information about their patients
- Changes in models of health care means clinicians are
often working with professionals across multiple specialties
- The rise of chronic diseases requiring complex care will
place further pressures on/from clinicians to have
ready access to a patient’s complete health record
- Clinicians (generally) respect their patients’ privacy; but as
the environment shifts to more coordinated care, the idea
of being a “data custodian” may also evolve
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8. Who owns consumers’ health data?
The government’s demand – need for evidence
- Shaping health policy to improve health outcomes at the
population level requires government to have evidence-
based advice
- A wealth of data currently exists, but is fragmented and
untapped
- As the nation adopts a robust eHealth platform, there will
be an ever growing wealth of information about
Australians’ interactions with the health system
- Government may be in a position to take on a more active
role in preventive medicine if information can be
presented effectively
- Consumers would need to be consulted and give consent
to having their information used by government 8

9. Who owns consumers’ health data?
The researchers’ demand – solving problems
- Outside of government, researchers in medicine and
academia have a strong desire to access health information
to better understand disease treatments and population
health
- Consumers are largely supportive of research if their
information can be used to help others
- Researchers often face insurmountable hurdles
overcoming privacy legislation, even though legislation
and policies embrace role of researchers
- Data custodians must be brought into the discussion about
appropriate uses of data and role of researchers
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10. Who owns consumers’ health data?
What’s required? 7 steps towards data maturity
- Getting governance of information right
- Making digital data the norm
- Bringing data together
- Using data to add value to organisation/policy/delivery
- Using it to support clinicians
- Using systems and data to empower consumers
- Extending data’s value and reach to clinical research
Source: KPMG International
….. Balanced with appropriate controls and regulation for
better health care and consumer outcomes.
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