Presentation of Leanne Wells, CEO, Consumers Health Forum of Australia, at the Health Care & Social Media Summit 2015 Plenary Session, "Who owns your Big Data?"

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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