The rise of the ‘ePatient’: how it is affecting clinical practice and research Fernando J. Martin-Sanchez Professor and Chair of Health Informatics Melbourne Medical School Faculty of Medicine, Dentistry & Health Sciences &Director, IBES Health and Biomedical Informatics Research Lab.
• PERSONALIZED PREVENTIVE HEALTH MAINTENANCE• PARTICIPATORY MEDICINE• PATIENT-CENTRED CARE• DEMOCRATIZATION OF HEALTH INFORMATION
E-patients• Gimme my damn data!• The patient will see you now…• Let patients help• Nothing about me without me!• Dave de Bronkart• Regina Holliday• Hugo Campos• Salvatore Iaconesi• Marian Sandmaier
The Digitalization of Medicine• Digital revolu-on in other domains (banking, insurance, leisure, government,…) • The incorpora-on of digital systems in healthcare is lagging behind other sectors: – Reasons: complexity, privacy, volume of data, lack of demand – It has greatly aﬀected healthcare at the hospital or research centre level. – The digital revolu-on has not yet reached medicine at the pa-ent/ ci-zen level • BUT THIS IS STARTING TO HAPPEN NOW !!!
Participatory Healthà Patients empowered, informed and involved indecision making, prevention and learning self tracking devicesSocial networks games Participatory Health mobile Internet of things sensors PCEHR
Participatory health• Personal genomics• Personal diagnostic testing• Personal health records• Personal medical images management• Patient reading physician’s notes• Patient-initiated clinical trials• Patient reported outcomes measurement• Sensors for Self-monitoring and self-quantifying• Shared decision making
Crowdsourced clinical trials• Clinical Research with the patients, not on the patients• Examples – 23andMe – Parkinson’s Disease – PLoS Genetics, 2 new genetic associations – PatientsLikeMe – Nature Biotech. Self-reported data from 600 patients on the use of lithium for Amyotrophic Lateral Sclerosis (ALS) – Acor, RevolutionHealth, Curetogether, Genomera, Althea Health
Patient reported outcomes• Health services and outcomes research• Measuring quality of care from the patient perspective NHS PROMs NIH
• Self tracking / self quantifying / self monitoring• The belief that gathering and analysing data can help them improve their lives!• QS’ers doubling every year.– 10K members, 65 meetup groups• Larry Smarr– 10years quantifying his body – Weight – physical activity: calories burnt (body media) – Food intake – Sleep (Zeo) – blood chemicals (60 Markers) – cholesterol/triglycerides / Apo B / Ω – 6, Ω – 3/ C-reactive protein - Ultrasound – (plaque in arteries) – stool test – colonoscopy – DNA – Microbiome• Fitbit – Sleep – Movement• NODE Sensor Environment
Sensors for data collection Environmental sensors Genomic sensors Phenomic sensorsEnvironmental risk factors Biomarkers (DNA sequence,(pollution, radiation, toxic agents, …) proteins, gene expression, epigenetics Physiological, biochemical parameters (cholesterol, temperature, glucose, heart rate…) Integrated personal health record
IssuesPros Cons• Motivation • Privacy• Deepening understanding • Security of their health • Education• Self-improvement • Cyberchondria• Risk profiling • Equity• Prevention • Regulation, accreditation• Shift terciary à secondary • Role of the clinician à primary à home care • Infrastructure needs• Data donors for research • Therapeutic gap (ethics)
UoM offer of HBI studies – Feb 2011 Subjects (image processing , genomics) MD Masters at MDHS Master Master Master Master (Public Health, …) of IS of IT of of Bio- BiomedicalGraduate informatics engineeringUndergraduate Major in infor- Bachelor matics Bachelor of Science of Biomedicine 34
UoM education strategy in HBI Master of Bio- 5 PhD in Health Informatics6 informatics2 Lectures 1 2 New 3 7 Subjects (image subjects New stream processing, Subjects or HBI eHBIs & genomics) on Health stream Content eHBIm IT MD Masters at MDHS Master Master New Masters Master (Public Health, Nursing) of IS of IT (Cancer, of Biomedical Ageing, engineeringGraduate Information)Undergraduate 4 Honours Major in infor New major in Bachelor matics health informatics Bachelor of Science of Biomedicine Lectures