Health Data Cooperatives Citizen-Controlled Health Data Repositories as a Basis for Big Data Analytics in Health

Transcription

1 Health Data Cooperatives Citizen-Controlled Health Data Repositories as a Basis for Big Data Analytics in Health ehealth2014 May , Athens Prof. Ernst Hafen

2 Behavior Health Drugs Therapy Genome Environment

3 Technology Generates New Data and Silos Genome sequencing Costs in 2-3 years below CHF Data contain important personal information Effectiveness of drugs Health risks Mobile Health > health applications Longitudinal health monitoring without a visit to the doctor s office New data silos, no data integration

4 Precision Medicine Need for Aggregation and Integration of Health Data > Google Maps of Health Ref: Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease National Research Council of the National Academies of Sciences, USA 2012

5 The Beginning of a Revolution 30 years 1984 Commodore Ernst Hafen

6 The Health Data Crisis Data silos (physician, hospital, mobile Apps, labs) Incompatibilities No aggregation of data Citizens have no control over their data Empowerment is lacking Unnecessary costs and treatments Data standardization initiatives failed (i.e. UK s NHS Connecting for Health)

7 Unnecessary healthcare costs 765 bn = 30% Total healthcare spending in US (2009): $2.5 Trillion Source: IOM report The Healthcare Imperative: Lowering Costs and Improving Outcomes 2009 data

8 Data Integration Needs Precision Medicine Google Maps of Health Data Integration? Medical Data Silos Genomic and mhealth Data Silos

9 Data Integration Needs the Citizens Precision Medicine Google Maps of Health Medical Data Silos Genomic and mhealth Data Silos

10 How to Empower Millions of Citizens to Contribute to Data Integration and Precision Health?

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12 Participatory Research (first examples) Patientslikeme.com 23andme.com Meforyour.org, UCSF

13 The Personal Data Dilemma Missing transparency and trust Caught in the net of personal data (invisible barbed wire, E. Morozov) Personal data as a New Asset Class (WEF) Estimated market value of personal data (w/o health data) 1 tn in 2020 (BCG Study) Strong competition by multinational shareholder-driven companies Digital feudalism

14 The Citizens and their Data are the Third Pillar of Personalized Health Association Data and Health Founded July 2012

15 The Cooperative Ideal Corporate Form for Storing Personal Data The cooperative DNA: We do it ourselves, on our own terms, self-supporting; rather than depending on government or pure capital investors One member, one vote Each person has similar amounts of health data (i.e. 6 bn letters in the genome) Long tradition in Europe

16 Health Data Cooperatives (HDC) Citizen-owned, citizen-centered Secure storage, management and sharing Citizens decide what data to share with whom (doctors, friends, research) > Active informed layered consent Citizen decide how much information to receive (right not to know) Citizens decide how to invest revenues in research, education or information platforms

17 Structure of the Health Data Cooperative Data Sharing in Circles Friends Doctor Research Patient group Dashboards Data Visualization, Annotation Data Storage in Spaces Swiss Cloud Check-ups ups Blood Genome 23andme Colonoscopy Fitness Dacadoo Runnkeeper X-ray Knee Injury Surgery Physiotherapy CT Scans Cance r data Drugs Histology Name, birthdate, blood group Emerg ency data Vaccination Organ donor, patient will Apps API API API API API API API API API API API API API Data Providers Lab Hospital 23andme Apps Doctor Clinic Clinic

18 Personal risk factors Drug dosing Life style recommendation Providers Data Health Data Cooperatives secure storage and management Public Services Public Health Research Pharmaceutical Research Medical Research

19 HDC 2.0 A Federation of National HDC Cooperatives Federation of national HDCs Common IT structure Common data storage in country with strong data protection laws Adapted to national healthcare systems Profits stay national HDCs A truly European solution

20 Project Status 3 year effort Broad support from Swiss stakeholder (politics, academies, physicians, cooperatives) European Alliance of Personalised Medicine European Health Forum Gastein Pilots start this year in Switzerland and The Netherlands Join us in the liberation from digital feudalism

21 Digital Serfdom Personal Data

22 Self Determination Trust Control Data Cooperatives