Advancing brain and mental health research
via global data sharing and governanceFranco Pestilli
Associate Professor
The University of Texas

Damian EkeResearch Fellow
De Montfort UniversityMatthew Brown
Technology Lead
The Wellcome TrustIt takes a village

https://neurosciencenetwork.org

Mental health is a global problem.
Brain and mental health research areglobal enterprises.
Their research requires sharing
biological and behavioural measuresacross international cohorts toaccelerate equitable development oftreatments for all peoples.

The IBI Data Governance Task ForceRecommendations●●●●Make IDG a priority
Develop principles for IDG
Develop practical tools andguidance for streamlined IDG
Increase awareness andeducation on IDG

https://neurosciencenetwork.org

Lack of clarity onlaws hinders datasharing
While brain and mental healthresearch strives to become
international, the lack oftransparency and navigability ofexisting legal, ethical, andsociocultural guidance imposesbarriers to data sharing.

Eke et al., 2021
10.1016/j.neuron.2021.11.017

If done right,
data governancecan facilitate
researchhttps://neurosciencenetwork.org

A robust brain and mental healthInternational Data Governance
Framework (IDGF) can turn heavystones into stepping stones toaccelerate research anddiscovery.
Eke et al., 2021
10.1016/j.neuron.2021.11.017

The Kavli data governance pilot
Identify Bilateral Data Sharing
Challenges (USA-AUS; EU-USA)
Develop Data Governance
Documents around a speciﬁctechnology.
Focus on EEG and MEG data

Hayashi, Caron et al., in preparation

The Wellcome Trust project
How can brain and mental health data be shared across national borders in a
way that maximizes beneﬁts to society and aﬀected individuals while
upholding laws and ethical principles?
Develop a practical approach for
exploring current challenges toresponsible international data
governance along four dimensions:
technical, legal, lived-experience andethical.
Credit: Sebastian Mar / Wellcome Photography Prize 2020
Licence: Attribution, Non-Commercial CC BY-NC

Data governance is defined nationally
Access to data at an international
scale can advance brain researchby increasing the opportunities forpooling data across cohorts,
diversifying the existing cohorts
within a nation and achieving thestatistical power necessary for
scientiﬁc rigor.

Facilitatory international data governanceThe objective is to create responsible
and sustainable governanceframeworks for data sharing, building
toward our long-term goal of forminga sustainable global consortium todevelop, operate, update anddisseminate a robust brain and brain
and mental health IDGF.

The Wellcome Trust project – TeamFranco Pestilli
The University of Texas USA

Damian Eke
De Montfort University UK

Thomas Nichols
Oxford University UK

Amadi Ihunwo
University of Witwatersrand South Africa

Ricardo Chavarriaga
Zurich University of Applied Sciences Switzerland

Fernanda Tovar Moll
D’OR Institute for Research and Education

pestilli@utexas.edu

We need you!

Ambassador program: Legal, Ethical, Technology, and Lived-Experience Ambassadors.
Organize a workshop: Help organize Workshops in high, medium and low income countries.
Become a consortium member: Help us form a sustainable global consortium to develop,operate and disseminate IDGF similar to GA4GH.org for genetic data.
Contribute data or expertise to the pathﬁnder projects.
This is an opportunity to build a responsible and sustainable data infrastructure.

Matthew here onMatthew here onMatthew here onMatthew here onAdvancing brain and mental health research
via global data sharing and governanceFranco Pestilli
Associate Professor
The University of Texas

Damian Eke
Research Fellow
Montfort University

pestilli@utexas.edu

Matthew Brown
Technology LeadThe Wellcome TrustExample pathfinder study
Dementia, Parkinson’s Disease, Controls.

Wogu, Flim, Caron et al., in preparation

High-income country tool for MRI dataprocessing
INPUT

OUTPUT

High-income country AI tool for MRI datasynthesis

INPUT
Nigerian Clinical data

OUTPUT(MP-RAGE)
Nigerian clinical data

Understanding
brain and mentalhealthhttps://neurosciencenetwork.org

Mental health is a global problem.
The WHO has developed a special
initiative on mental health.
Mental health conditions contribute topoor health outcomes, premature
death, human rights violations, andglobal and national economic loss.
World Health Organization. (2019). The WHO special initiative formental health (2019-2023): universal health coverage for mental health.
World Health Organization.
https://apps.who.int/iris/handle/10665/310981.

The Kavli data governance pilot
Analysis of laws and legislation that regulate the sharing of human data
between the USA and France and the USA and Australia.
Interim results● Data User Agreements that apply to USA-Australia● Data Processing Agreement● Data Deposition Consent Form
● Draft IDG Framework Proposal● Modiﬁed brainlife.io use of cookies

What is next
● Analyze legislation between USA-EU-France● Develop documents speciﬁc to USA-France● Develop interface brainlife.io / France

The Wellcome Project – Advisory Board

Sebastian Mar / Wellcome Photography Prize

Amy Bernard
Bernd Stahl
Charlene Sunkel
Jack Van Horn
Paolo Maria RossiniPawel Swieboda
Maryann Martone
Stephen Smith
Terry Jernigan
Peter Goodhand

The Kavli Foundation
De Montfort University
Global Mental Health Peer Network
The University of Virginia
Università Sacro Cuore
EBRAINS
University of California San Diego
Oxford University
University of California, San Diego
Ontario Institute for Cancer Research

NIH, NSF, GA4GH, INCF, IEEE, OECD, SONA, Allen Institute, Kavli
Foundation, NIH, OpenNeuro, EBRAINS, brainlife.io, CONP, GMGPN.org,APS, OECD, UNESCO, GESDA, OHBM

Data-driven research approach
Regional and global workshops to collect laws, ethical needs and cultural
challenges.
Pathﬁnder case studies to test international data exchange using validation
datasets.

Matthew here on