Open Data for Good Health Trust Transparency Transformation

Open Data for Good Health – Trust – Transparency – Transformation – Open Data Expo, Praha, March 8 th, 2021 Anne Moen, RN, Ph. D, FACMI, FIAHSI Professor, director Ui. O: e. Colab, University of Oslo Professor II, Norwegian Center for e. Health Research

Citizens – infant, child, adolescents, adults, older adults constitutes the heterogeneous ‘ALL of US’ – www. Colourbox. com 0321/Moen

Citizens and the growing plethora of digital Health Data • Patient Generated Data – PROM, Io. T, patient facing apps – Real word data to complement and expand existing repositories Observations in Daily Living and Patient Reported Outcomes – Interoperability, analytics • Digital health literacy – e. Skills, Empowerment, Confidence, Trust & reliance – Sense making – visualization, interpretation, decisions • Best Practice – Meaningful Health Data Use – Data – Information – Knowledge – Wisdom – Innovation supported by real evidence or high expectations ? 0321/Moen

Citizens and Health Data Collect Personal observations Observation Daily Living PROM – PREM Adherence to treatment Behaviors – choices Special purpose apps, e. g. activity, diet, Peer group “consensus” Personal Health Record Vaccination, allergies Electronic Health Record Patient summary e. Prescription Genomics Information integrity Complement Curate, review, annotate Select, correct, Explain experience Coordinate - collaborate Support network Team engagement Sense-making Issue of concern – problem – experience solutions – decisions Personalize views, Situated combinations Literacy - digital, health, scientific Tailor - specific concern Co-create my health story Control Self care coordination e. Power - activate Data driven enablement Coordinate activities Share at own discretion Temporal – Permanent Share in part – share all Donate data for R&D etc. GDPR enables Overview - where info is “Right to be forgotten” Trusted other’s records and their accountability Custodianship EU e. Health Stakeholder Group (2016 – 2019) – Rapporteur Moen 0321/Moen

“SMART PATIENTS” – all citizens Self-assured Motivated Aware Resourceful Talented No one left outside DIGITAL DIVIDE Scared Minors! Anxious / Aged Reluctant Time consuming Inspired by P. F. Brennan, 2000 Picture: Elisabeth Østensen, Ui. O 0321/Moen

Gravitate-Health – improving personal use & experience Picture: Line H. Linstad, NSE Picture: Hanne Bjertnes, Ui. O 0321/Moen 7

Trust - Digital Health Literacy • Motivation, competence and capacity to identify and discriminate health information - multiple digital sources • Make data and information into trusted, actionable knowledge for everyday use • Critically appraise, make judgments and decisions to maintain or improve quality of life for Good Health during the life course • Relevant for me over time – my life trajectory • Trust is about Patient engagement 0321/Moen 8

Transparency – Source: https: //en. wikipedia. org/wiki/FAIR_data 9

Transformation – citizen engagement • Multiple electronic information systems • No complete overview of the patients health and illness history • No history of current or past medications the patient has taken • Collaboration of a range of health and welfare professionals operating at different levels of care • General Practitioner, Specialist Doctors, Pharmacists, Nurses, etc. • Primary and specialist care and the Home setting • Engage patients, families and informal carers • Lack tools for knowledge about • Effective communication with and among all involved is a challenge 10

Good Health – use personal data in everyday life • Prepare, collect and understand relevant • data – information – knowledge – experiences • Across sites and together in TEAMS • from uni-disciplinary task distribution to inter-professional collaboration that include citizens • Digital navigation tools – Compass / G-Lens Focus on what’s relevant for ME Data Policies – user’s rights – evidence 0321/Moen 11

Thank You Anne Moen, University of Oslo Email: anne. moen@medisin. uio. no Twitter: @annemoen_oslo Gravitate-Health has received funding from the Innovative Medicines Initiative 2 Joint Undertaking (JU) under grant agreement No 945334.