ENHANCING THE USE OF BIG DATA IN HEALTHCARE: RECOMMENDATIONS FOR CONGRESS AND LEGISLATION

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1 ENHANCING THE USE OF BIG DATA IN HEALTHCARE: RECOMMENDATIONS FOR CONGRESS AND LEGISLATION Impacts and Opportunities for Open Big Data OSEHRA Summit 2014 Marc Wine, MHA

2 Open Health Community Leadership Putting people first using Big Data. Liberating the raw sources of Big Data. Catalyst for health through decision-support.

3 The President s National Priority

4 Big Data Platforms for Health Learning Health System Pillar for Federal Health IT Change Blue Button Campaign DHHS Better care at lower costs ~ New Infrastructure for Clinical Research + Drug Discovery Integrates EHRs, mhealth, genomics

5 Big Data Research and Development Initiative March 29, 2012 with six federal agencies collaborating. Improving the tools and techniques. Access, organize and innovate from big data operations.

6 Enhanced Use Health Open Big Data Cost accounting ACOs, transparency for value. Protect against Health Big Data. for pure closed proprietary profit gain. Create Open Big Data analytics - algorithm neutrality.

7 Key Issues for Legislative Action Concerns about privacy and security should receive the highest priority when crafting and issuing new law and regulations related to 'Big Data in health care. The use of health information entered by consumers and aggregated into 'Big Data' systems can intentionally and unintentionally introduce systematic errors. Manipulation of information about price, quality and access to care are often kept secret by healthcare providers to maintain a competitive edge and hide many shortcomings.

8 Congressional Focus Five Health IT Big Data Categories 1. Web and social media data 2. Machine-to-machine data. 3. Big transaction data. 4. Biometric data. 5. Human-generated data

9 An. Key Observations and Findings with Big Data Use in Health Care ACA reforms need to address the topic of Big Data. Big Data often kept in hard-to-penetrate silos owned by companies that are less than willing to share. Interoperable and 'open' data architecture and infrastructure are key to enabling the collection, storage, and analysis of 'Big Data in healthcare.

10 A Framework for Legislation Coordinated Care Management Recommendations Revise CMS Medicare billing and data requirements to balance and transition toward data entry on Big Data clinical applications that will align with value-based outcomes priorities. Personal Health Management Recommendations Congress should develop legislation that incentivizes putting Open Big Data and personal health data analytics on health management in the hands of the consumer to facilitate no-go decisions based on the evidence of lesser quality of individual providers.

11 A Framework for Legislation Impacting Variations in Care Recommendations As health care procedure prices vary between provider networks, Congress should address openness of big data for giving consumers simplified trusted views of proprietary business practices and pricing for common procedures and outcomes. Data Usability, Meaning and Trust Recommendations Congress should develop legislation that provides investments for creative partnerships between university health IT programs and vendor businesses that educate professionals and health businesses to use big data extensively.

12 A Framework for Legislation Big Data Fragmentation Recommendations The FDA should consider rules requiring drug companies and their stakeholders to open big data across their supply chains to make better use of analytics for postmarket drug surveillance. Architectural and Infrastructure Recommendations The ONC, NIH, FDA and CMS with DoD and VA should cooperate by ensuring that the open infrastructure, integration, and open exchange rules in relation to Big Data support practitioners ability to analyze data in realtime as it becomes available.

13 A Framework for Legislation Authority, Use and Security Recommendations Agencies should coordinate their workgroups and rulemaking to reassure consumers and patients that their data will not be misused by mandating reduction or encryption linkage between personally identifiable data and its big data source that can result in voluminous breaches of security.

14 Big Data Use in Health Care Challenge The complex search for privacy and truth continues Call to Action Recent inventions and business methods call attention to the next step which must be taken for the protection of the person, and for securing to the individual the right to be let alone numerous mechanical devices threaten to make good the prediction that what is whispered in the closet shall be proclaimed from the house-tops. Louis Brandeis The Right to Privacy, 1890

15 Questions ~* Marc Wine Principle Health IT Practice Phone: Co-author Medical Informatics 20/20