A picture that reads: BBMRI-ERIC. Public and Patient Involvement an Engagement (PPIE) in Biobanking
FontsA A
ContrastA A
Newsletter sign-up
I give permission for BBMRI-ERIC to send me their newsletter and emails about subjects which they think may be of interest to me. I can unsubscribe from all emails at any time. I understand that my information will be processed according to BBMRI-ERIC's privacy notice.
  • FAQ
  • Downloads
  • Home
x

bbmri-eric website

  • Find samples and data
  • About
    • Member States & National Nodes
    • Governance
    • Stakeholder Forum
    • Expert Centres
    • Staff
    • Jobs
    • BBMRI-ERIC Podcast
  • Services & Support
    • Join the BBMRI-ERIC Federated Platform
    • IT SERVICES & RESEARCH
      • Find samples and data
      • MIABIS
      • Access Policies
      • Tools
    • Colorectal Cancer Cohort
    • Quality Management
    • ELSI Services & Research
    • GDPR Code of Conduct
    • COVID-19 Research
      • List COVID-Ready Samples and Data on our Directory
  • EU Grants
    • AHEAD
    • BigPicture
    • BIOINDUSTRY 4.0
    • canSERV
    • CETOCOEN Excellence TEAMING Phase II
    • CY-BIOBANK
    • DIAMONDS
    • EOSC4CANCER
    • EPND
    • EPPerMed
    • ERDERA
    • ERIC Forum 2
    • EUCAIM
    • EvolveBBMRI
    • GDI
    • INTEGRATE-LMedC
    • INTERVENE
    • ISIDORe
    • PRIMTECH3R
    • PROPHET
    • QUANTUM
    • RI-SCALE
    • Completed Projects
  • News & Events
    • News
    • Events
  • Contact
Home  - News & Events Overview  -  New publication: Public and Patient Involvement and Engagement (PPIE) in Biobanking  
  • Find samples and data
  • About
    • Member States & National Nodes
    • Governance
    • Stakeholder Forum
    • Expert Centres
    • Staff
    • Jobs
    • BBMRI-ERIC Podcast
  • Services & Support
    • Join the BBMRI-ERIC Federated Platform
    • IT SERVICES & RESEARCH
      • Find samples and data
      • MIABIS
      • Access Policies
      • Tools
    • Colorectal Cancer Cohort
    • Quality Management
    • ELSI Services & Research
    • GDPR Code of Conduct
    • COVID-19 Research
      • List COVID-Ready Samples and Data on our Directory
  • EU Grants
    • AHEAD
    • BigPicture
    • BIOINDUSTRY 4.0
    • canSERV
    • CETOCOEN Excellence TEAMING Phase II
    • CY-BIOBANK
    • DIAMONDS
    • EOSC4CANCER
    • EPND
    • EPPerMed
    • ERDERA
    • ERIC Forum 2
    • EUCAIM
    • EvolveBBMRI
    • GDI
    • INTEGRATE-LMedC
    • INTERVENE
    • ISIDORe
    • PRIMTECH3R
    • PROPHET
    • QUANTUM
    • RI-SCALE
    • Completed Projects
  • News & Events
    • News
    • Events
  • Contact
  • FAQ
  • Downloads
  • Home

I am looking for information as

Researcher

  • Looking for biobanks
  • Looking for samples & data
  • Looking for trusted partners (Expert Centres)
  • Looking for ELSI guidance
  • Looking for scientific collaboration
  • Looking for advice on standardisation
  • Looking for info on projects
  • Looking for scientific publications

Industry

  • Looking for biobanks
  • Looking for trusted partners (Expert Centres)
  • Looking for samples & data
  • Looking for advice on standardisation
  • Looking for scientific collaboration

Patient

  • Working with patient organisations
  • About ethics, rights & societal issues
  • Looking for general information on BBMRI-ERIC
  • About our scientific collaboration

Citizen

  • FAQs (what is a sample, what is a biobank)
  • Looking for biobanks in your country

Member States

  • Looking for information on your country
  • How to become a Member
  • Looking for reports and statutes
  • Looking for samples & data

New publication: Public and Patient Involvement and Engagement (PPIE) in Biobanking

This article is 493 words, and a two-minute read.

Constant dialogue with patients, caregivers and the public is a key guiding principle in biobanking. However, meaningful patient and public involvement – also known as research participant engagement – is still not standard practice for many biobanks. Where engagement does exist, it is often limited to one-way communication rather than mutual involvement. Thoroughly incorporating the opinions and lived experiences of biobank participants and their families can bring meaningful insights that benefit not only those research participants but also researchers and the entire biobanking community.

To facilitate a transition to active partnership, the BBMRI-ERIC community, which includes the National Nodes and Stakeholder Forum Patients and Citizens Pillar, have created a set of guidelines. This outcome is a key element of the BBMRI-ERIC 10-Year Roadmap and the current 2025-2027 Work Programme.

The Public and Patient Involvement and Engagement (PPIE) in Biobanking publication outlines key principles and provides guidance to support biobanks in involving patients, caregivers and the public. Special focus is given to partners in Steering Committees and Data & Sample Access Committees to ensure participant voices are included where decisions are made.

Eric Vermeulen is Chair of BBMRI-ERIC Stakeholder Forum Patients and Citizens Pillar who initiated and also coordinated contributions from multiple patient organisations. He explains:

“Public and patient involvement and engagement (PPIE) in biobanking is both crucial and feasible. The principles demonstrate to the biobank community why PPIE is important and how it can be integrated into biobank policy and practice.

“The principles were first presented at Europe Biobank Week (EBW) in 2024, and a draft version was discussed at EBW 2025. BBMRI-ERIC and its Stakeholder Forum hope that the principles will inspire and guide the biobanking community to discuss and implement public and patient involvement and engagement in their biobanking activities.”

Manuela Pausan, BBMRI-ERIC’s Scientific Stakeholder Manager, is part of the authoring team and highlights how:

“It is important that biobanks involve patients, caregivers and the public not merely as participants, but as equal partners in the co-creation of biobanking practices.

“The sustainable and ethical advancement of biobanking requires multi-stakeholder collaboration, bringing together patients, caregivers, community representatives, biobankers, clinicians, ELSI and quality management experts. Only through such inclusive partnerships can biobanks meaningfully shape science and serve the diverse needs of the society.”

 

Benefits of public and patient involvement and engagement (PPIE) in biobanking

Biobanks are strongly encouraged to engage with patients and public in order to:

  • Improve transparency and trust
  • Improve research quality and relevance
  • Get different perspectives
  • Sustainability
  • Increasing recognition of PPIE

BBMRI-ERIC recommends the following principles to be considered when biobanks are developing their PPIE activities:

  • Co-create clear objectives and scope of PPIE activities
  • Enable engagement and involvement in different levels of biobank governance
  • Ensure diverse representation of patients and public
  • Provide training and support
  • Create conditions for compensation or reimbursement whenever possible
  • Make contributions visible
  • Sustainability of involvement and engagement
  • Ensure transparent and accessible outreach of the patient and public engagement
  • Measuring and Evaluating Impact

Read the full PPIE.

Show me:

  • ALL News & Events
  • Research
  • Press Releases
  • Industry
  • Quality
  • Events
  • Scientific Publications
  • News
  • Vacancies
  • ELSI
  • Projects
  • Webinars
  • Policy

The website was co-funded within ADOPT BBMRI-ERIC, a project that has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 676550.

Neue Stiftingtalstrasse 2/B/6
8010 Graz, Austria

Phone: +43 316 34 99 170
Fax: +43 316 34 99 17-99
Mail: contact@bbmri-eric.eu

 

 

Favourites

  • About us
  • News & Events
  • Publications

Quicklinks

  • Directory
  • Negotiator
  • National Nodes

How to find us

Newsletter sign-up

I give permission for BBMRI-ERIC to send me their newsletter and emails about subjects which they think may be of interest to me. I can unsubscribe from all emails at any time. I understand that my information will be processed according to BBMRI-ERIC's privacy notice.

Follow us

rss feed
(c) BBMRI-ERIC® - Legal Notice - Privacy Notice
TOP
Website by Werbeagentur Rubikon
We use cookies to analyse the traffic on our websites. All personal data is anonymized and not shared with third parties! Click here for more information.
Accept