Making trees from paper. Towards transparent care and decision making by guideline based information standards and decision support

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1 Making trees from paper Towards transparent care and decision making by guideline based information standards and decision support Dr. Ir. Xander Verbeek

2

3 Netherlands Comprehensive Cancer Organization (IKNL) IKNL is the knowledge and quality center for oncological and palliative care and cooperates with managers, care professionals and patients on continuous quality improvement. Netherlands Cancer Registry (NCR) Population based registry since Medical data of 2,3 million cancer patients (>200 million data items) /year. Clinical Practice Guidelines Quality standards. Development, maintenance, implementation and evaluation. 60 guidelines oncological care (

4 Care quality cycle NCR

5 Context Information standards - Information standards based on quality standards (guidelines)*. - As bridge towards quality registry and enabler for registration at the source. - Prevent redundant quality indicators and registration. Registration - Registration at the source, but what is the source? Guidelines - More effective development, implementation, evaluation, shorter life cycle. Innovation - Clinical decision support based on guidelines and NCR data. * Toetsingskader kwaliteitsstandaarden en Meetinstrumenten, Zorginstituut Nederland, 2015

6 In the consultation room Dr. Smith, surgeon Mrs. Sabine Strong has a consultation with Dr. Smith. She has been diagnosed with breast cancer. It has been a while since Dr. Smith has seen a case like this

7 Gap between research and practice Mrs. Strong is interested in the best possible treatment. For herself. She is entitled to it. Dr. Smith wants to provide high quality of care to Mrs. Johnson. Even more, it is his duty. To keep up to date Dr. Smith has to read 27 scientific publications. Every day..for breast cancer only

8 Source: IBM Watson

9 Guidelines Decision support by guidelines (passive)

10 Prediction models Decision support by prediction models (passive)

11 Multidisciplinary oncological care Decision support by tumor board (active)

12 Field research decision making in practice

13 Reinterpretation of data during tumor boards Field research: reinterpretation, new insights. Scientific research*: different interpretation radiology 40%, pathology 20% different treatment 10%. Tumor board report as source Higher level aggregated source document with new insights as basis for: Delivered care to patient. Transparency towards patients. Starting point (shared) decision support. Accurate and relevant registration. * Newman, E.A., et al.,. Cancer, 2006., Lim, H.K. et al., ANZ J Surg, Whelles SA et al, Otolaryngol Head Neck Surg. 2010, Wiggans MG et al, HPB Surg. 2013, van Hagen P et al, Int J Clin Oncol 2013, Santoso JT et al, Int J Gyn Cancer 2004,

14 Ambition healthcare ICT innovation program Decision Support Tumor board, shared decision making Prediction models Patient Pre Tumor board Post NCR (big) data Guideline Knowledge sources Information standard Trial database Registration at the source PROMS, Tumor board report NCR Closed loop New knowledge generation

15 From guideline via tumor board to registry Pathology Radiology Tumor board Module (EHR) IKNL knowledge server Guideline Recommendation: Surgery Trial Alert: NEXUS-II Send to NCR NCR (database)

16 OncolinQ and Oncoguide OncolinQ OncolinQ Linking Information Sources for Quality Tumor board Module (EHR) Information standard IKNL knowledge server Oncoguide Oncoguide Decision trees and knowledge server NCR (database) Richtlijn werkgroep mammacarcinoom

17 Oncoguide

18 Oncoguide From guideline to decision trees and information standard - Decomposition of care pathway. Successfully applied to national Clinical Practice Guidelines: - Breast cancer: 229 pages (> words) 115 data items, 73 decision trees. - Colorectal, prostate cancer: concept.

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22 Sneak preview

23 Mrs. Strong, 67 jaar breast cancer Clinical staging ct-diameter 2,3 cm ctnm ciii Diagnostiek bij neo-adjuvant _ Primary treatment Neo-adjuvante therapy Pathological staging Grade G3 Grade >G1 Vascular invasion G1 <2cm ct-diameter 2cm Vascular invasion ctnm L2 L3 >L3 <cii ciii Eerste keuze 4 x q3wk AC Tamoxifen Hormonale therapy 4 x q3wk AC à 12 x q1wk paclitaxel Hormonale therapy Chemotherapy OF OF OF FAC Vervolgbeleid na neo-adjuvant RT with Boost RT with Boost Tweede keuze FEC Vervolgbeleid na neo-adjuvant Primary treatment: Neo-adjuvant therapy by chemotherapy Vervolgbeleid na neo-adjuvant

24 Mrs. Strong, 67 jaar breast cancer Clinical staging ct-diameter 2,3 cm ctnm ciii Diagnostiek bij neo-adjuvant _ Primary treatment Neo-adjuvante therapy Pathological staging Grade G3 Grade >G1 Vascular invasion G1 <2cm ct-diameter 2cm Vascular invasion ctnm L2 L3 >L3 <cii ciii Eerste keuze 4 x q3wk AC Tamoxifen Hormonale therapy 4 x q3wk AC à 12 x q1wk paclitaxel Hormonale therapy Chemotherapy OF OF OF FAC Vervolgbeleid na neo-adjuvant RT with Boost RT with Boost Tweede keuze FEC Vervolgbeleid na neo-adjuvant Primary treatment: Neo-adjuvant therapy by chemotherapy Vervolgbeleid na neo-adjuvant

25 Mrs. Strong, 67 jaar breast cancer Clinical staging ct-diameter <2 cm ctnm ciii Diagnostiek bij neo-adjuvant _ Primary treatment Neo-adjuvante therapy Pathological staging Grade G3 Grade >G1 Vascular invasion G1 <2cm ct-diameter 2cm Vascular invasion ctnm L2 L3 >L3 <cii ciii Eerste keuze 4 x q3wk AC Tamoxifen Hormonale therapy 4 x q3wk AC à 12 x q1wk paclitaxel Hormonale therapy Chemotherapy OF OF OF FAC Vervolgbeleid na neo-adjuvant RT with Boost RT with Boost Tweede keuze FEC Vervolgbeleid na neo-adjuvant Vervolgbeleid na neo-adjuvant Primary treatment: recommendation not yet possible, enter Vascular invasion

26 Mrs. Strong, 67 jaar breast cancer Clinical staging ct-diameter <2 cm ctnm ciii Diagnostiek bij neo-adjuvant _ Primary treatment Neo-adjuvante therapy Pathological staging Grade G3 Grade >G1 Vascular invasion >L3 G1 <2cm ct-diameter 2cm Vascular invasion ctnm L2 L3 >L3 <cii ciii Eerste keuze 4 x q3wk AC Tamoxifen Hormonale therapy 4 x q3wk AC à 12 x q1wk paclitaxel Hormonale therapy Chemotherapy OF OF OF FAC Vervolgbeleid na neo-adjuvant RT with Boost RT with Boost Tweede keuze FEC Vervolgbeleid na neo-adjuvant Vervolgbeleid na neo-adjuvant Primary treatment: Neo-adjuvant therapy by 4 x q3wk AC à 12 x q1wk paclitaxel OR RT with Boost

27 Phased approach App and website. EHR systems. Quality and regulatory. - Class 1 medical device. - MDD, CE-certification. - Maintenance and post market surveillance. - NEN 75xx Clinical evaluation.

28 OncolinQ

29 Towards an information standard for oncology Breast Cancer Preliminary results Information analysis 200 tumor board reports 134 dataitems 115 dataitems Guideline analysis 81 dataitems NCR Dataset

30 Towards an information standard for oncology Only ~60% guideline required items currently in tumor board reports 134 dataitems dataitems ~50% NCR items in tumor board reports dataitems ~30% guideline items already monitored in NCR

31 Phased approach Pathology Radiology 3 Tumor board 2 1 Guide line Lab Information Standard 2 4 NCR

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33 Roadmap Decision trees & Informationstandard Mamma Prostaat Colorectaal Long Hematologie Melanoom Gyn IKNL Knowledge server Oncoguide App/Web MDO / EPD interface Prediction models/ Trial alert Pilots POC Source registration POC Decision support Research/ Clinical evaluation Methodology from guidelines to flowcharts / information standard SUS evaluation Impact QoC Retrospectief Impact QoC Prospectief Shared decision making PhD

34 In summary Guideline Better guidelines faster Tumor board Transparent decision making NCR More efficient registration Patient Transparent and better care

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37 twitter.com/iknl

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