Programme 2018-09-21T13:50:10+00:00

PROGRAMME

BeyondRCT

DAY 1

Tuesday September 25, 2018.
Venue: ABN-AMRO, Amsterdam

08:30

Registration

Registation, coffee and tea

09:00

Opening

Welcome by conference chair – Maarten den Braber, CEO NextHealth
Welcome by Anja van Balen, ABNAMRO

09:15

11:00

MORNING PLENARY – SETTING THE SCENE

  • Between heaven and earth: where are we now, 2 years after BeyondRCT-1? Introduction to the programme – Gaston Remmers PhD. MD|O
  • The need for a broad scientific methodological repertoire – Prof. Jeroen Geurts, professor Translational Neurosciences, VUmc Amsterdam, Chair ZonMw, Dutch Funding Agency for Health Research
  • Organizing citizen science in health: the open humans approach – Bastian Greshake Tzovaras, PhD, Research Director at OpenHumans.org
  • Modern, citizen-centred data stewardship for the common good: why do we have to go beyond the GDPR? – Juuso Parkkinen PhD MyData.org and Nightingale Health. Finland
  • What data infrastructure do we need to facilitate Co-operative Citizen Science? – Erik Schultes, GO-FAIR Office

11:00

Break

11:15

12:05

Kick-off BeterGezond – finding solutions for the 8 million Dutch people living with a chronic disease

11: 20 h Prof. dr Nico van Meeteren, Director Health-Holland and Hanneke Dessing, Collaborating Health Funds (SGF), leads of the BeterGezond call.

11:30 h Why we all benefit: the MyOwnResearch approach to delivering value for patients, science and business  – winner of the BeterGezond competition. prof. dr. Mat Daemen (chair Research Council Amsterdam UMC), dr. Gaston Remmers  (MD|OG, projectlead MyOwnResearch), dr. Anje te Velde (Amsterdam UMC, PI MyOwnResearch) Presentation of purpose and ascope of MyOwnResearch.

11:50 h Testing single-subject (n=1) effects by collecting intensive longitudinal data – Jan Houtveen, PhD

12:10

12:25

Rapid fire talks

  • Eddie van Breukelen, Kidney patient and founder of Beterschappen: Group program and grocery service that helps kidney patients to keep or even improve their kidney function
  • Rogier Koning, cluster headache patient and founder of Nobism.com. A patient self research data platform on cluster headaches
  • Gerard van Oortmersen – text mining on GIST cancer – making sense of unstructured facebook-contributions by GIST-patients

12:25

13:00

Panel discussion and Plenary debate

  • Pieter Jeekel, director Zelfzorg ondersteund (SelfCare Supported)
  • Willem Jan Meerding PhD, Meeding Advies and author of the 2017 report of the Dutch Council voor Health and Society (RVS): ‘without context no evidence’.
  • Maarten Pekelharing, CEO Winclove probiotics, board member NPN –Dutch trade association  for businesses in the food supplements industry

13:00

14:00

Lunch

14:00

14:20

Rapid fire talks

Super pitch

  • Erik Gerritsen, Secretary General Dutch Ministry of Health – Why we need radical, citizen owned proposals in health care?

Rapid Fire Talks

  • Maartje Niezen, Rathenau Institute –  Preliminary research findings on changing roles in data management
  • Frans Saris – Self research by informal caretakers with relatives with dementia
  • Sabine Wildevuur & Paulien Melis, Waag, VU University – Citizen driven science within transdisciplinary research, Waag

14:20

16:30

AFTERNOON BREAKOUT SESSIONS – DIVING DEEP

Breakout workshops – two rounds of 1 hour sesions

Round 1, 14:30-15:30

  • What is the ICT and data governance infrastructure needed to enable Co-operative Citizen Science: the Personal Health Train, FAIR principles and the Holland Health Data Cooperative –  Hosted byErik Schultes (GO FAIR office), Wouter Franke (ZIN, ZorgInstituut Nederland), Wessel Kraaij (Board member HollandHDC and prof Applied Data Analytics Leiden University)
  • Matching the creative industry with Life Science & health: what can methods like design thinking and design bring to the healthcare table? Looking towards potential future cross-over collaboration (in Dutch and EU-calls) around citizen driven science within transdisciplinary research –  Hosted by Waag, Sabine Wildevuur and Paulien Melis
  • MyOwnResearch: personalization of microbiota management through citizen research – Hosted by the MyOwnRsearch consortium. With contributions of Henk Duinkerken (Microbiome Centre, chair Mijn Data Onze Gezondheid), Isolde Besseling (Winclove probiotics), Anje te Velde (Amsterdam UMC), Aletta Kraneveld (Utrecht University).
  • N-of-one studies in the realm of lesser known health paradigms: cases and approaches by Applied Universities of Leeuwarden and Leiden –  Hosted by dr. Esther Nederhof (VhL) and dr Erik Baars (Leiden)
  • Citizen Science on pain management: exploring the challenges and potential of Nobism – Hosted by Rogier Koning, nobism.com

Round 2, 15:30-16:30

  • Research challenges in the era of Telemedicine and mobile health applications: designing BeyondRCT – Hosted by Miriam Vollenbroek-Hutten (Twente University) &  Somaya Ben Allouch (Saxion Univeristy of Applied Sciences).
  • Accelerating the uptake of fresh innovations into the care budgeting policies – the Hii Holland approach – Hosted by Carl Moons, prof. Clinical Epidemiology, Julius Center for Health Sciences and Primary Care, University Utrecht
  • Developing a Type 2 Diabetes health data community – Hosted by André Boorsma and collegues, TNO
  • ‘Doctor,  I have a gut feeling…’ – How to bridge the gap between science and practice? Hosted by Tjitske Bezema (Hidden health Solutions) & Isolde Besseling (Winclove)
  • A fundamental debate: the assumptions behind RCT’s and n-of-one studies in nutrition – Hosted by Denis Zijlstra and Martijn de Groot

16:30

17:00

WRAP-UP (PLENARY)

Harvesting insights and action points for the workplan Co-operative Citizen science

DAY 2

Wednesday September 26, 2018.
Venue: De Waag, Amsterdam

09:00

13:00

MAKING IT SUSTAINABLE: towards a long-standing Public Private Partnership in Co-operative Citizen Science

Goal of this session is to convert the good intentions and interesting insights into a workplan Co-operative Citizen Science for the period 2019-2021. Input is needed from science, business, patient and citizens organizations and investors.
The session is hosted by Health Holland, Topsector Life Sciences & Health

Key issues:

  • Making the diversity of Co-operative Citizen Science visible
  • Building appropriate ICT-infrastructure and Data Governance
  • Developed adequate research approaches and statistical tools
  • Create a routing from Co-operative Citizen Science to guideline development
  • Develop and strengthen co-creative citizen science labs involving business,
  • Generate sustainable funding

This session is by invitation only. If you wish to receive such an invitation for the workings session on Wednesday 26th, please tick yes when you register for the conference.