The document discusses biobanking from the patient perspective. It provides an overview of biobanking, including what biobanks are and why they are important for medical research. It also discusses how patient advocacy groups can be involved in biobanking activities through governance, establishing biobanks, and providing patient input. The presentation emphasizes that while biobanks contain patient data and samples, they must also maintain patient trust and center the patient perspective to be successful.

1. Biobanking
from the patient perspective
Derick Mitchell, IPPOSI
WECAN Academy, July 2023

2. n Everyone gets a chance to contribute or speak
n 15 mins – basics of biobanking
n 10 mins – how PPI is embedded in biobanking
n 5 mins – group discussion and interaction
n We will use mentimeter (www.menti.com) so ensure your phone is charged!
n Please raise your hand if you don’t understand words or concepts
Today’s presentation

3. By the end of today, you will know
n What IPPOSI stands for....J
n What a biobank is, and what it is not...!
n How to connect your advocacy and PPI activities with
biobanking research

4. Who are IPPOSI?
We are a patient-led organisation
that works with patients, science & industry
to put patients at the heart of health innovation
Irish Platform for Patient Organisations, Science and Industry

5. What do we do, and how?
n In-person/virtual conferences
n Training programmes
n Digital discussions & podcasts
n Matchmaking
n Member resources
n Coalitions and networks
n Citizens’ juries
EDUCATION ADVOCACY INFORMATION

6. IPPOSI contributions in biobanking
n 2011 - Managed the stakeholder forum of the
preparatory phase of BBMRI – the European
biobanking research infrastructure
n 2012 - ‘Patient Principles’ document published and
endorsed by over 15 pan-EU patient orgs
n 2015 - Together with other patient advocates,
published a review article on the patient perspective
in biobanking
n 2021 - Consortium + steering group member of first
National biobank in Ireland on COVID-19 research
Renaissance Hotel, Brussels
16 September 2009
Building a Biobanking Research
Infrastructure For Europe
BBMRI Stakeholder’s Forum
Residence Palace, Brussels
09 June 2010
BBMRI: A Step Closer
Stakeholder’s Forum Report

7. What is a biobank?
A collection of biological samples that accepts, processes, stores and distributes
biospecimens and associated data for use in research and clinical care
Data associated with samples have
increased in complexity:
• Basics (date of collection, diagnosis)
• Extensive datasets (many aspects of
participant or patient phenotype)
• Rapidly extending (e.g. genetic,
proteomic, + other “omics” information)
Biological samples / Biospecimens:
• Blood, Serum
• DNA, RNA
• Tumor cells,
• Fluid, Tissue,
• Cell lines

8. Why should I care?
• The development of any new drug or diagnostic assay needs
high quality human biological samples + data
• Biobanks are thus essential for
• the understanding of the diversity of human diseases
• providing key information on the influence of environment, lifestyle on health
• providing a basis for disease prevention programmes, public health

9. ‘Feeding’ the demands of
personalized medicine (PM)
• PM has increased the demand for high
quality specimens with accurate, reliable,
standardized clinical and laboratory data
• Optimum collection, processing, storage,
tracking, shipment of samples are key to
successful outcomes of studies

10. Benefits of biobanks
Population-based biobanks
• Countries need to study unique
aspects of their population
• Epidemiological studies
• Prospective Studies
Disease-specific biobanks
• Identifying the causes, both genetic &
environmental of the
disease/condition
• Includes family collections
A biobank represents a single, organized, common resource that can be utilized for hypothesis-
driven research, to interface with industry, and to monitor the evolution of effective/curative
dose in societies and communities

11. Research Publications on Biobanking 1996-2018

12. Global Standards and Biobank networks
International Societies
• International Society of Biological and
Environmental Repositories (ISBER)
formed in 2000
• ESBB formed in 2013 for European,
Middle East and African region
• Investigators, biobank managers,
directors, regulator representatives,
bio-informatic managers, patient
advocates, lawyers and others with
interest in biobanking meet annually
to share knowledge in the field
Networks + Infrastructure
• EuroBiobank
• BBMRI-ERIC
• USA National Cancer Institute
(http://www.isber.org)
(https://esbb.org)

13. Biobanking = the intersection of science, society, ethics, the law, politics
Major issues include:
• Regulatory requirements,
• Ethical review
• Consent documentation,
• Genetic, genomic data,
• Sustainability of biobanks
• Previously:
• lets take extra samples ‘just
in case’....
• ‘Biobanking by stealth’

15. BBMRI-ERIC
• One of the largest research
infrastructure in Europe
• 23 Countries + IARC
• Common Services
• ELSI, IT, Quality
• National Nodes
• Stakeholder Forum includes
patient network
www.bbmri-eric.org

16. BBMRI-ERIC
Virtual biobank
• Can locate biospecimens for
testing and data mining from
multiple biobanks around the
world
• Accessed using portal to
connect biobanks and
investigators
https://directory.bbmri-eric.eu

17. Patient & Public Involvement in Biobanking Activities
(2015). Mitchell, Geissler et. al. DOI: 10.1186/s40900-015-0001-z

18. Biobanks
established by
patient groups
• Many patient communities investing own resources
in the establishment of new biobanks and biobank
infrastructures
• Association Française contre les Myopathies (AFM)
• Neuromuscular diseases. Founded DNA
biobank in the mid-1990s
• Patient Tumor Bank of Hope (Germany)
• PATH founded by breast cancer survivors,
intended for the sole purpose of supporting
breast cancer research
• Patient group retains decision-making power over
the biobank, whilst maintaining a tight partnership
with the scientists involved
http://www.genethon.fr/en/rd-2/dna-and-cell-bank
https://www.path-biobank.org/

19. Patients in Governance of a biobank
Wales Cancer Bank, UK (publicly funded)
• A Steering Group established the biobank
• 4 lay members on steering group, established patient & ethics committee
• Later reimagined to ‘Lay Liaison & ethics group’
• Reviews proposals:
• electronic consenting, volunteer consenting
• Role in Access procedures:
• researchers do not receive samples until the reviewing lay member is satisfied
that content & structure of lay summary describes the proposed research in
terminology suitable for a lay audience
Mayo Clinic Biobank (USA)
• Uses deliberative democracy techniques to involve patients and research participants in
the policy and decision-making of the biobank
• Community Advisory Board

20. Take-home messages about biobanking
‘It's all about trust’
‘Just because you have patient data
at the heart of your biobank
does not mean it is patient-centered’

21. www.ipposi.ie
info@ipposi.ie
@ipposi
Irish Platform for Patient Organisations, Science and Industry