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EBW24 Editorial
#EBW24 Editorial: Citizen & Patient Involvement: Emerging best practices?

#EBW24 Editorial: Citizen & Patient Involvement: Emerging best practices?

Join us at #EBW24. Discuss and explore with us the feasibility of and possible framework of guidance for citizen & patient involvement in biobank committees. 

Dr. Ciara Staunton from ESBB and Dr. Eric Vermeulen, chair of the BBMRI.ERIC Stakeholder Forum Patient and Citizens Pillar, share why panel session ‘Citizen & Patient Involvement: Emerging best practices?’ is not to be missed.

The importance of active citizen and patient involvement in biobank governance is well recognised as being important in fostering public trust in biobanking. Citizen and patients have an important role in ensuring that a biobanks’ governance processes, informed consent forms, and other pertinent documents are contextualised to the biobank’s population. Citizen and patient involvement can therefore play an important role in enhancing the quality and relevance of research, but crucially it can be an important factor in maintaining the social licence of the biobank.

In recognition of the importance of lay or public representation in decisions pertaining to research, many research ethics committees (RECs) for clinical research have provisions for lay members to be a citizen, a patient, or a patient representative. These members are therefore included in decisions on clinical research. This practice, however, is not the norm for biobanks and it is now time to consider whether and how citizen and patient representatives should be included in biobank governance committees.    

To inform the discussions in this space, three case studies of citizen and patient involvement will be presented and discussed. There are:

  • Involvement of rare disease patient experiences and perspectives in a biobank in Latvia will be presented. 
  • Better collaboration, user research and cocreation with patients in Sweden.
  • National Patient Participation within Biobank Sweden.

The chairs of the session, Ciara Staunton and Eric Vermeulen, will also report back findings from the workshop about citizen and patient involvement at the EBW on Tuesday May 14th. 

You are invited to give your opinion, inform us about your experiences, give advice about involvement in committees or other ways to involve citizens & patients. We aim to start drafting a guideline about citizen & patient involvement in biobanking with you!

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