Patient and Public Advisory Council
BBMRI-NL makes biomaterials, images and data retrievable, accessible and exchangeable for research on the prevention and treatment of diseases. Biobank- and data infrastructures contain samples and data of many citizens and/or patients to facilitate personalized health research. Biobank research is largely dependent on voluntary participation, public trust and societal involvement. 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 society and research.
Bridging Research and Society
Providing Societal Perspective
The Council consists of representatives of patient and other societal organizatins and experience experts with an affinitiy for biobank and health research. The council meets at least 4 times a year to discuss one main topic and current developments. These meetings always contain an informative part for which one of more guest researchers are invited and time for discussing the main topic. Topics to be discussed are current practices, problems, concerns or new developments, either brought up by the Council members or on request of biobank researchers. The meetings result for example in advice, recommendations, a (joint) publication or dissemination towards societal stakeholders.
Recommendations for Research
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
- 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 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.
For more information, please contact the Council Secretary dr. Tieneke Schaaij-Visser