data access requirements guiding principles and definitions

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Concept Pre-Proposal Investment Development Management & Close

Data Access Requirements, Guiding Principlesand Definitions

This document articulates the minimum expectations for access to datasets funded in whole or in part by the Bill &

Melinda Gates foundation.

Background and Applicability

Your Program Ofcer has determined that a Data Access Module

must be completed as part o developing this proposed

investment.

This document articulates the oundation’s minimum

expectations ith respect to data access. !or urther guidance

please spea" ith #our oundation Program Ofcer.

Background

$. %normation generated during the course o activities undedb# the oundation & in the orm o research studies' datasets

and evaluation results & can be signi(cant public goods. Data

o value to the oundation and to our partners can and

should be shared to ma"e better' aster and more ell)

inormed decisions and to advance (elds o technical

endeavor.

*. Accelerating the translation o "noledge into products'

deliver# models and policies can save and improve lives. The

completion o the Data Access Module ill result in data

access plan that adheres to our principles' promotes

accessibilit# o data generated b# oundation)sponsored

investments and demonstrates our commitment toorgani+ational transparenc#.

Applicability$ The re,uirement to produce a Data Access Module -resulting

in a Data Access Plan ma# appl# to all ne and reneing

investments' as ell as investments that receive

supplemental unding. !or completed or existing

investments' grantees and vendors are encouraged but not

re,uired to provide access to relevant datasets in a manner

consistent ith the oundation’s principles.

/. The re,uirement to provide data access applies to data

generated rom activities sponsored in hole or in part b#the oundation' here 0data1 includes inormation stored in

electronic orm resulting rom experimental or clinical

measurements2 observations obtained via surve#s2

intervies2 ,uestionnaires2 modeling or simulation2 or

abstraction o documents. 3uantitative and ,ualitative

inormation stored in datasets and accompan#ing metadata'

including codeboo"s' data dictionaries' and ,uestionnaires

-see belo or "e# de(nitions related to data access are the

ocus o our commitment to increased access to data that e

und.

4. The re,uirement to provide or data access applies to data

generated at all phases o the value chain2 i.e. rom

discover# and solution development2 to pilot or proo o

deliverabilit# testing and scaled implementation2 to polic#

and advocac#2 and evaluation.

5. The olloing table lists some' but not all' o the data t#pe

generated b# our investments and indicates the t#pes o

data to hich the Data Access Module ma# appl#.

Data Type Requirements Apply

Datasets generated

by focused researchstudies, and clinical orcommunity trials

Yes

Data fromsurveillance systemsor surveys

Yes

Datasets generatedby modeling orsimulation studies

Yes

Datasets generatedby evaluation studies

Yes

inancial andManagementInformation datasets

!o, unless data are ofclear scienti"c,evaluative, or policyrelevance asdetermined indiscussion #ith afoundation programo$cer

Physical material suchas tissue samples,blood-spots, or assays

!o

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Requirements

$ %n order to complete the Data Access Module' #ou ill

need to provide inormation about hat data and

datasets ill be generated2 hat ill be made

available and accessible2 ho access ill be ensured2

the technological means o ensuring accessibilit#

-see the Data Access Technical :uidance >ote2 the

costs o ma"ing data available2 and a timerame or

data release.

?. @e expect the chosen solution or ma"ing datasets

available ill be implemented as soon as possible

olloing (nali+ation o the identi(ed datasets' and in

accordance ith the timeline agreed ith #our

Program Ofcers.

. The data access plan that results rom completing

the module should also align ith the :uiding

Principles articulated belo.

B. Data should be made accessible or a period o at

least (ve #ears.

C. atisactor# implementation o data access plans

ma# be ta"en into consideration or uture unding

re,uests and decisions.

Guiding Principles

The olloing principles underpin our approach to data

accessE

• %espect =espect must be given to matters o

identit#' privac#' and con(dentialit# as the# pertain

to the individuals and communities rom or about

hom data are collected. =espect must also be given

to matters o attribution as the# pertain to

researchers' evaluators' and their collaborators.

• Accountability All processes and procedures or

data access ill be transparent' clear' and consistent

ith data management standards that ensure ,ualit#

data' appropriate securit#' and e,uitable access.

• 'te#ardship All ho produce' share' and use data

are steards o those data. The# share responsibilit#

or ensuring that data are collected' accessed' andused in appropriate a#s' consistent ith applicable

las' regulations' and international standards o

ethical research conduct.

• Cost-e(ectiveness @e recogni+e that ma"ing data

available can be costl#' and thereore not all data

generated in the course o a oundation)unded

activit# needs to be made publicl# available. There

are also multiple options or providing access. The

oundation Program Ofcer thereore has discretion in

deciding hat datasets should be shared and made

accessible' and the most cost)appropriate means o

ma"ing them available.

• Proportionality The needs o investigators must bebalanced against those o communities and sponsors

that expect bene(ts to arise rom the activities to

hich the# contribute inormation or resources.

• Innovation Data access encourages diversit# o

anal#sis and opinion2 acilitates the evaluation o

alternative h#potheses2 permits meta)anal#ses2 and

allos s#nthesis o data rom individual proFects into

a larger hole.

• )$ciency Providing idespread access to datasets

prevents unnecessar# duplication o eGort' enabling

the redirection o scarce resources to the most

promising ne research endeavors' and maximi+ing

the potential impact o investments.

• Capacity 'trengthening Data access can expedite

proessional development among up)and)coming

researchers and evaluators' particularl# in the global

south.

• Collaboration Hnsuring access to data among

institutions and across disciplines can also result in

greater productivit# and creativit#.

Data Access: Key Definitions

Data Access/Accessibility*he procedures by #hich any individual or

organi+ation can freely acuire and use datasets

collected or generated by foundation grantees or

vendors #ith funding provided by the foundation

Data access generall# involves activities such as cleaning'

storage and retrieval o data. A grantee or vendor has

provided data access hen a part# ho is not a member

o the unded stud# team is able to underta"e ne

anal#sis and generate ne "noledge using stud# data

accessible through implementing these data access

principles. An example o satis#ing data access is

depositing data in a public access data repositor#.

Data actual information, especially information

organi+ed for analysis or used to ma.e decisions or

produce research outputs such as publications or

#or.ing papers

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%n this context' Idata’ includes experimental

measurements2 clinical measurements2 or observations

obtained via surve#s2 intervies2 ,uestionnaires2

modeling or simulation' and abstraction o documents. !or

the purposes o a Data Access Plan' data does not include

laborator# noteboo"s' partial datasets' preliminar#

anal#ses' communication ith colleagues' drats oscienti(c papers' unpublished research protocols' or

ph#sical obFects such as tissue samples or specimens.

DatasetAn electronically stored collection of data and

associated "les

The data contained in a dataset ma# be rom primar#

data collection -e.g. a surve# or secondar# data

generation via aggregation or s#nthesis. Datasets ma#

contain one or more (les and should include (les that

contain the data themselves2 that document and explain

the individual variables2 and that explain on the collectionor s#nthesis methodolog#. ome o the inormation

describing the data ma# be contained in Imetadata’

stored ith the dataset -see belo.

Data Repository or ncla!eAn online storage solution for datasets that meets

the follo#ing set of criteria and satis"es the Data

Access Principles

• Data must be accessible or a minimum o 5 #ears

• Data should be easil# discoverable through

conventional search mechanisms b# an inormed la#

person -e.g. researchers and graduate students inthe (eld

• Metadata on the dataset should be made available

-see Metadata de(nition belo

• Data must be anon#mi+ed to protect individual

personal identi(able inormation -P%%

• Open data platorms should honor an# special

onership and access preerences as agreed

beteen the oundation and the data producer2 data

access ma# be limited to a speci(c audience or

granted on a case b# case basis

Disco!erable "or #indable$Datasets are discoverable #hen reference lin.s to

the datasets are included in online directories /eg

from repositories01 a reference lin. to the dataset

is provided in any publications or reports, or on the

pro2ect3institution #ebsite1 and3or returned #hen

running a standard internet search

A common internet search engine should return a clear

description o the data and a or"ing lin" to the dataset

or the repositor# here the data are housed.

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%etadata

Information stored electronically #ith or as part of

the dataset and should be provided along #ith the

data #henever they are do#nloaded, accessed, or

shared

This ma# include items such asE

• Year o data production

• Jontent

• Data Dictionar#

• Knon Data 3ualit# pro(le;issues

• Data completeness

• Other salient eatures o the data and dataset

• Methodolog# used to collect;compile;create data

Researc& 'utputs%eports, publications, scienti"c presentations,

policy briefs, #or.ing papers that present summary

statistics, analysis and conclusions derived from

primary or secondary data

=esearch outputs are distinct rom datasets. =eporting

on or sharing research results and outputs -e.g. summar#

statistics or tables ul(lls some o the obFectives o the

oundation’s global access principles' but does not satis#

the re,uirement o data access.

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data access requirements guiding principles and definitions

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