ECRD 2018 SESSION 0402 Ri De Ridder Former director general at the National Institute of Health and Disability Insurance of Belgium

• KCE report 234 – 12/2014 – Incorporating societal preferences in reimbursment decisions – relative importance of decision criteria according to Belgian citizens • A discrete choice experiment • Relative weights for criteria • E.g.: therapeutic need:

• Quality of life: 0.43 • Inconvenience of current treatment: 0.43 • Life expectancy: 0.14

• KCE report 272: Multi-criteria decision analysis for the appraisal of medical needs: a pilot study

Spinal muscular atrophy (SMA) Amyotrofe Lateraal Sclerose (ALS) Recidiverend glioblastoom Pancreaskanker BRCA+ Mesothelioom (2L) Duchenne spierdystrofie Vroegtijdig en selectieve wondverzorging diepe brandwonden bij kinderen Acute lymfoblastische leukemie (ALL) Metastatic uveal melanoma Acute myeloïde leukemiee (AML) FLT3 positieve Gemetastaseerd niet kleincellig longkanker T790m+ Recidiverend en/of gemetastaseerd plaveiselcelkankers van het hoofd-halsgebied (SCCHN) Gemetastaseerd gevorderd maagkanker HER2 positief (2L en +) Ernstige bloedingen en coagulopathie met fibrinogeendeficiëntie Multiple sclerose type primary progressive Osteogenesis imperfecta Niet kleincellig longkanker ALK + met progressie na crizonitib Gemetastaseerd borstkanker ER+/HER2Niet kleincellig longkanker PD-L1+ (3L) Gemetastaseerd borstkanker BRCA+ Niet kleincellig longkanker KRASm+ Recidiverende of refractaire Chronische Lymfatische Leukemie met 17p deletiemutatie (17p del R/R CLL) Gevorderde systemische Mastocytose (ASM) Niet kleincellig longkanker (L2) Myasthenia gravis Lysosomale zure lipase deficiëntie Lupus nephritis Sporadic inclusion-body myositis (sIBM) Periodische koortssyndromen (HIDS, TRAPS, crFMF) Alzheimer Non-Hodgkin lymfoom (1L) Chronische hepatitis C bij patiënten met chronische nierziekte stadium 4/5 Emergency treatment of known or suspected opioid overdose Alpha-1 antitrypsine deficiëntie (AATD) Refractaire partiële epilepsieaanvallen met of zonder gegeneraliseerde tonisch-clonische aanvallen (SGTCS) Clostridium difficile infecties (preventie van de recidieven) Hypogammaglobulinemia (HGG) by solid organ transplantation Hidradenitis Suppurativa Niet infectieuze uveitis Hypoparathyroidie

life threatening result QOL result rarity result social vulnerability result societal impact result

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Study 2016-03 (HSR) Implementation and added benefit of PROMs and PREMs in Belgian health care

Technical description of each data collection

Healthdata.be at a glance healthdata.be Use of National Registry Number as ID

HD4DP

Registration in Primary System

 Data Captation

HD4RES

 Secure Data Transfer & encoding of IDs

All manual input remains available (structured and coded, according to [inter]national standard, based on CBBs) in local database of DP: • Import in future upgrade of EPD/LIMS; • Re-Use for internal BI & QI

 Data Monitoring

Annotation & Correction Request

DATAWAREHOUSE (SAS)

 Data Validation

 Data Storage

Trusted Third Party for encryption and pseudonymization

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Analysis

HEALTHSTAT

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BI-Reporting

Implementing proms and prems Integrated care pilots Followup utilisation of reimbursed devices in spine surgery

Broader context: empowering patients, families and communities • Personal health record • Goal oriented care • Casemanagement • Patient participation • Integrating between health and social care • Population management