Programme 2018-07-08T09:08:56+00:00

PROGRAMME

BeyondRCT

DAY 1

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

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 – a patients view – Gaston Remmers PhD. MD|OG
  • Challenges and potential of citizen science in the digital era – Stephen Friend, CEO SAGE Bionetworks, ex Chief Health Officer Apple (tbc)
  • The new statistics: how to make sense of contextualized, fuzzy data? – Jan Houtveen, PhD
  • Modern, citizen-centred data stewardship for the common good – Prof Angela Brand, Univ Maasticht (tbc)

11:00

Break

11:15

12:00

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

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

Why we all benefit: the MyOwnResearch approach to delivering value for patients, science and business  –  winner of the BeterGezond competition. Anje te Velde (Amsterdam UMC), Gaston Remmers  (MD|OG), Aletta Kraneveld (UU), Henk Duinkerken (Microbiome Center NL), Maarten Pekelharing (Winclove)

12:00

12:30

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
  • Building collective value from n-of-1: a patients journey on on Parkinsons Disease – video Sara Riggare MSc
  • Rathenau Institute. Preliminary research findings on changing roles in data management

12:30

13:00

Plenary debat

13:00

14:00

Lunch

14:00

16:30

AFTERNOON BREAKOUT SESSIONS – DIVING DEEP

Super pitch

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

Breakout sessions

  • What is the ICT en governance infrastructure to enable Co-operative Citizen Science: the Personal Health Train, FAIR principles and the Holland Health Data Cooperative – Barend Mons, Wessel Kraaij, Peter van Dalen, Erik van Oorschot.
  • MyOwnResearch: personalization of microbiota management through citizen research
    With contributions of Henk Duinkerken Director Microbiome Centre, Dr. Burkhard Schutz director Biovis Diagnostik, Winclove probiotics, Anje te Velde, Aletta Kraneveld
  • Matching the creative industry with Life Science & health: what can methods like design thinking and design bring to the table. Hosted by Waag Society , ism Paul Hekkert, Directeur Topsector Creative industry en hoogleraar TU Delft (tbc)
  • DiabetesM 2 Data community: a collaborative project – TNO, Leiden University MC, Vital 10. André Boorsma PhD
  • (More to follow)

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.