Health Care and Social Media Summit 2015 WHO OWNS YOUR BIG DATA? Who owns consumers health data? 1
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 2
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 3
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? 4
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 5
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 6
The sector demand better technology - Clinicians cannot provide best-possible care without being fully informed - Clinicians of all professions have an interest in having upto-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 7
The government s demand need for evidence - Shaping health policy to improve health outcomes at the population level requires government to have evidencebased 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
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 9
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. 10