Patient & Public Advisory Council

Since biobank research depends largely on voluntary participation, and biobanks contain data and samples from citizens and/or patients, public trust and societal involvement are crucial. To ensure the ideas and concerns of these groups are heard, the Patient and Public Advisory Council was created.

Members of the PPAC

  • Lisette Eijdems  - UMCG
  • Ineke Hazelzet - Ikone
  • Marlieke Janssen-ten Haaf
  • Maria Jongma - Hevas
  • Marleen Kaatee - PSC Patients Europe
  • Antje Kleef
  • Riekje Kok - Lifelines
  • Theo Mulder
  • Susanne Rebers - NKI
  • Gaston Remmers – Holland Health Data Cooperative, Inspire2live, Stichting Mijn Data Onze Gezondheid, Habitus
  • Evelyn van Royen
  • Huig Schipper - Inspire2live
  • Erik Steinfelder - Chairman
  • Liesbeth van Albada - Lifelines
  • Eric Vermeulen – VSOP

From left to right: Marlieke Janssen-ten Haaf, Susanne Rebers, Huig Schipper, Riekje Kok, Eric Vermeulen, Gaston Remmers, Lisette Eijdems, Tieneke Schaaij-Visser

What is BBMRI-NL’s Patient and Public Advisory Council? 

Biobank research is largely dependent on voluntary participation, public trust and societal involvement, since it deals with samples and data of many citizens and/or patients. The Patient and Public Advisory Council aims to offer a national platform for the interests, concerns, and needs of participants, donors, and patients in biobank research, thereby bridging the gap between society and research.

The council consists of representatives of patient and other societal organizations and experience experts with an affinity for biobank and health research. The council meets at least four times a year to discuss one main topic and current developments. The meetings always contain an informative part for which one or more guest researchers are invited and time to discuss the topic at hand.
Topics that can be discussed are current practices, problems, concerns, or new developments, either brought up by the Council members or on request of the biobank researchers. Meetings result in for example advice, recommendations, a (joint) publication or dissemination towards societal stakeholders.

Why BBMRI-NL’s Patient and Public Advisory Council?

Since biobanks are largely dependent on voluntary participation, and since they contain data and samples from patients and/or citizens, public trust and societal involvement are considered important aspects of biobank research. To ensure that patients and citizens are heard, and their ideas and concerns are taken into account, the Patient and Public Advisory Council was created.

Recommendations from the Patient and Public Advisory Council

The council has made recommendations on several themes on request of BBMRI-NL or BBMRI researchers, e.g.:

Self-recorded data for research:

  • Make explicit why and how the data are useful for research
  • Make recording of the data/the measurements easy
  • Create a (positive) link with the participants individual health
  • Provide adequate information about the study
  • Use trustworthy (providers of) the recording equipment

Incidental findings:

  • Set up an adequate procedure how to handle incidental findings
  • Involve representatives of the envisioned participants
  • Make sure the procedure fits the specific study
  • Be open to report incidental findings, where relevant and possible

Information about scientific use of leftover biomaterial:

  • Improve the reach of the current information materials
  • Use various communication tools

Other over-arching societal themes on which the council has provided recommendations include:

  • Communication towards public and patients
  • Transparency about research goals, approaches, results and conclusions
  • Informed consent and privacy
  • Next steps towards implementation of research results and impact on healthcare

From BBMRI-NL towards the HEALTH-RI

BBMRI-NL and other research infrastructures have jointly embarked on a common strategy for a collective Personalized Medicine & Health Research Infrastructure in The Netherlands: Health-RI.
Health-RI consolidates their activities into one platform, which:

  • will function as common portal;
  • will proved shared services;
  • will act as the collective voice.

The Patient and Public Advisory Council will be transformed into the Citizens & Patients Chamber within Health-RI.

In case you have a request for the Council or want more information, please contact the Council Secretary dr. Tieneke Schaaij-Visser.