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JMIR Preprints Cumyn et al
Patients and Members of the Public’s Wishes
Regarding Transparency in the Context of Secondary
Use of Health Data: A Scoping Review
Annabelle Cumyn, Jean-Frédéric Ménard, Adrien Barton, Roxanne Dault,
Frédérique Lévesque, Jean-François Ethier
Submitted to: Journal of Medical Internet Research
on: December 12, 2022
Disclaimer: © The authors. All rights reserved. This is a privileged document currently under peer-review/community
review. Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for
review purposes only. While the final peer-reviewed paper may be licensed under a CC BY license on publication, at this
stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.
https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
Table of Contents
Original Manuscript ....................................................................................................................................................................... 5
Supplementary Files ..................................................................................................................................................................... 52
Figures ......................................................................................................................................................................................... 53
Figure 1
...................................................................................................................................................................................... 54
Figure 2
...................................................................................................................................................................................... 55
Multimedia Appendixes ................................................................................................................................................................. 56
Multimedia Appendix 1
.................................................................................................................................................................. 57
Multimedia Appendix 2
.................................................................................................................................................................. 57
https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
Patients and Members of the Public’s Wishes Regarding Transparency in
the Context of Secondary Use of Health Data: A Scoping Review
Annabelle Cumyn1, 2 MDCM, MHPE; Jean-Frédéric Ménard1, 3 BCL, LLB, PhD; Adrien Barton1, 4 PhD; Roxanne
Dault1 MSc; Frédérique Lévesque1 MSc; Jean-François Ethier1, 2 MDCM, PhD
1Groupe de recherche interdisciplinaire en informatique de la santé Faculté des sciences/Faculté de médecine et des sciences de la santé
Université de Sherbrooke Sherbrooke CA
2Département de médecine Faculté de médecine et des sciences de la santé Université de Sherbrooke Sherbrooke CA
3Faculté de droit Université de Sherbrooke Sherbrooke CA
4Institut de recherche en informatique de Toulouse Toulouse FR
Corresponding Author:
Jean-François Ethier MDCM, PhD
Groupe de recherche interdisciplinaire en informatique de la santé
Faculté des sciences/Faculté de médecine et des sciences de la santé
Université de Sherbrooke
2500 boul. Université
Sherbrooke
CA
Abstract
Background: Learning Health Systems rely on the secondary use of health data to improve care. Transparency regarding this
secondary use is frequently cited as necessary to increase patient awareness, support alternative approaches to consent, and foster
trust.
Objective: To review the current published literature to identify different stakeholders’ perspectives and recommendations on
what exactly should be communicated to members of the public regarding the secondary use of health data for research, how and
at what conditions.
Methods: Using PRISMA-ScR guidelines, we conducted a scoping review through several bibliographic databases (Medline,
CINAHL, PsycINFO, Scopus, Cochrane Database of Systematic Reviews, and PubMed) to locate a broad range of studies
published in English or French up to November 2022. We included articles that reported a stakeholder’s opinion or
recommendations of what should be communicated to patients or members of the public regarding the secondary use of health
data for research, how to communicate the information or at what conditions. Data were collected and analyzed using an iterative
thematic approach with NVivo software.
Results: A total of 178 articles was included in this scoping review. Communication was deemed crucial for many purposes
including: a) educating patients and members of the public on the potential benefits; b) giving some control over data use c) as a
form of reciprocity and, d) as a condition to build and maintain trust. Elements that should be communicated include generic
content such as governance and regulatory frameworks, scientific aims and potential future uses of the data and specific content
that is relevant to each person with regards to the use of their data. Methods for communication generally favored broad
approaches such as nationwide publicity campaigns, mainstream and social media for generic content and mixed approaches for
specific content including websites, patient portals and face-to-face encounters. Content should be tailored to the individual as
much as possible with regards to length, avoidance of technical terms, cultural competence, and level of detail.
Conclusions: This review can serve as a foundation for evaluating current communication approaches with regards to secondary
use of health data or designing future strategies. Future work will be needed to assess which strategies achieve the greatest
outreach while striking a balance between transparency and utilization of resources.
(JMIR Preprints 12/12/2022:45002)
DOI: https://doi.org/10.2196/preprints.45002
Preprint Settings
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JMIR Preprints Cumyn et al
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https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
Original Manuscript
https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
Patients and Members of the Public’s Wishes Regarding Transparency in the Context of
Secondary Use of Health Data: A Scoping Review
Introduction
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Definition of health data in this review
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Table 1.2
Inclusion criteria Exclusion criteria
Language and article availability
6
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JMIR Preprints Cumyn et al
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https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
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Table 2.1$(N/0)
Article characteristics Articles, n (%)
Year of publication
2002-2006
2007-2017
2018
2019
2020
2021
2022
8(!L)
/( <L)
<('L)
/(!L)
(L)
( L)
!(0L)
Continent where study was conducteda
North America 0'( 0L)
https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
Europe
Asia
Oceania
Africa
Worldwide
'8(38L)
'(3L)
!(3L)
(L)
0(!L)
Study designb
Qualitative
Quantitative
Mixed approach
Commentary
Law and politics
Descriptive
8(!L)
!(8L)
8(!L)
8(!L)
'(8L)
(L)
Perspectives reported in the studyc
Public
Patients
Researchers
Law and politics
Ethics
Healthcare
e-health/informatics
'0(30L)
!8(33L)
'(!L)
(L)
!(0L)
('L)
0(!L)
a North America: Canada, United States; Europe: United Kingdoms, Iceland, Ireland, Sweden, Italy,
Germany, Denmark, Switzerland, Norway, Portugal, The Netherlands, Belgium, France, Finland; Asia:
Saudi Arabia, Taiwan, China, India, Japan; Oceania: New Zealand, Australia; Africa: Ghana, Uganda,
Zambia, Kenya, Singapore; Worldwide: studies with multiples countries involved.
b Qualitative: workshops, interviews, focus groups, councils, and panels; Quantitative: survey and Delphi;
Mixed approach: combination of quantitative and qualitative designs; Commentary; Law and politics:
ethical, legal or governance frameworks, guidelines, requirements, and other policies; Descriptive study.
c Not mutually exclusive. Public: Indigenous communities, minority community members, elderly, blind
and low-vision communities and early adopters of emerging technologies; Patients: vulnerable, rare
diseases, cancer, cardiac, Parkinson’s disease, mental health, pediatric (parents and families), and
representatives of patients’ organizations; Researchers: research participants, students, researchers,
recruiters, sponsors, investigators, scientific staff, data infrastructure employers and managers, research
governance experts; Law and politics: policy-makers, legal professionals and regulatory staff; Ethics:
ethicists and research ethics committee members; Healthcare: healthcare professional, health managers,
health systems leaders; e-health/informatics: e-health experts; device/app developers; data sharing experts.
What to communicate
=$ $"#$
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Generic content
= 3 $ $
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Table 3.=E
Type of generic
content
Description Exemplary citations of different stakeholders extracted
from reviewed studies
General
information on
Education around data
types and secondary uses
[…] I think that education in general is a really good tool
for the layperson to understand what’s happening and I just
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JMIR Preprints Cumyn et al
secondary use of
health data
[11,19,30–61]
8! !'!8'
Education on Research
Ethics Board role
'!<!3
think that that’s probably the key, educating away the fears
but also disclosing – what are we responsible for? What
could happen? It’s going to help people trust what you’re
doing a little more too.(38)
Participants clearly identified a number of areas where
there was a need for more knowledge and work around data
sharing. […] There were four main areas where greater
knowledge was required: (1) clarity regarding the legal and
clinical implications of shared data for patients and
providers, (2) an understanding of legislation across
Canada, (3) decision-making about what data are needed
and (4) being aware of the context of electronic medical
records [EMR] data.(="$
3!)
Information on
data governance
[11,31,33,34,36,40–
42,49,52–
54,57,59,60,62–
115,115–118]
Who: identity of data
overseers
3 8!3/'030!8
0<<<! and data
users 3!/3///8
00'83 /0
What and what for: type
of data used and type of
secondary use
!3! !8'<'/!0'8
<0</0
With whom: data sharing
practices
!8'<'!8<8/<!<'
0
How: sources of funding
8!8' safeguards
3 !3/3<3<
Respondents identified biobank objectives, governance
structure and accountability as the most important
information to provide participants. Respondents’ concerns
about biobanking generally centered around the control and
ownership of biological samples and data, especially with
respect to potential misuse by insurers, the government and
other third parties. (B"$
' )
I’m just trying to say there is this framework, you know we
say that there is a governance system in place which will
protect the patient and we can look at them like we do the
financial institutions and we’re quite happy with how they
exist, well they’re quite well developed. There’s a framework
around this and we want some assurance.($
'/)
Well, I did not know how freely they could share the
information, that they are actually sharing them with
payers. So, something needs to be done with that because we
have a right to know where our information is going […].
( )
I guess, for me I think it’s not so much the party accessing
the data, but rather how is the data being used for and for
what purpose. So knowing that, then I’m able to make a
better decision as in whether I want to participate. …if it’s
from a big pharmacy company, then I think it may be for a
commercial gain, but again it still help people. So I guess
it’s still the purpose, how the data being used, the purpose
what is it used for.(8 )
Similar to other findings […], our discussants emphasized,
however, that disclosure of data-sharing practices was
important in order to make a truly informed decision and
fulfill the fundamental ethical principles of participant
autonomy and respect.(,ODEI$
'3)
Overall, workshop participants felt that if they knew more
about the processes and safeguards in place, they might feel
more empowered, and hence more open and trusting in the
decision-making process around data collection and sharing
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JMIR Preprints Cumyn et al
(and may not, therefore, need to opt-in). ($
)
Information on
ethical and legal
aspects
[31,33,35,39,40,52,
53,60,63,64,71,73,7
5,77,80,81,85,86,10
3,111,118–131]
Legal framework
3!0 '/
Confidentiality and
privacy measures
33'<'3//!0<0'/
0383<
: .
3!'<<3
Penalties for misuse
338'</3//0!<3
0
Participant rights
/3<3
Intellectual property
rights !
It was also suggested that there would be some benefit in
raising public awareness of the complex legal environment
surrounding data sharing and that this might demonstrate
the legitimacy of researchers’ access to data. (?"
$ <)
How it is being used, how I am protected from corrupt or
evil activities, and what precautions are taken to protect it.
(' )
To protect our privacy in a world where we no longer
control our data, we must obfuscate health data, penalise
the misuse of health data, and improve transparency around
who shares our data and for what purposes.(
)
Information on
technical aspects
[33,34,38,40,52,53,
62,62,63,73,78–
80,82,83,86,91–
93,95–
97,103,106,118,120
,130,132,133]
Data linkage
!3038'<33
Types of datasets 3 '
Whether medical records
are accessed /0
How data are shared
300<88<'3<
Data security
!/3/88/<3/<
33
Duration of data storage
and how it is stored
/0838!8/0
I would want to know what kind of security the central
network is using. Are they using any type of encryption at
all, who has access to the system? How do they maintain
that type of access, you know, just general [questions]"
( <)
Patients also brought up the importance of restricting data
access, oversight of such restrictions and voiced specific
questions about data security, for instance, wanting details
on how the data would be transferred. Some patients
expressed uncertainty about current practices; as one
patient said, ‘I don’t know who has access to my
information’.(?5.$<')
Kept in a very safe location. I hate qualifiers like that. It
doesn’t make me feel very safe. I: What would make you feel
safe? P: When I see ‘will be kept in a very safe location.’ I
would want specifics"(/3)
Information on
scientific aspects
[11,31,46,53,64,65,
68,73,75–
77,79,85,89,92,93,9
5–
97,99,115,132,134–
136]
Nature of the research
and objectives
3' '0/'///88!8
/!33'
Research methodology
/883
Risks and benefits
'!3'!/3/!///80!0
888!8'883
Around half of the respondents want to receive an easily
understandable summary of project (51%) and information
about the management rules (49%).(1"
$$/')
It would be very helpful to the reader and potential study
subject to have some, at least, some examples of the type of
research the researchers intend to do"(/3)
[my mobile data] shows a terrible step count, but that’s
because I don’t hold my phone while playing netball, long
walks etc.(/!)
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Data validity and
possible biases /!/88'
General information on secondary use of health data
=$:$
$(=3$)$83< !/030
83 8/!$//3/!3 ".
"
1$$ <!!3/
<"?
[…]communicating positive messages about how data are used: ‘promoting the success storiesE
3And I can see an advantage in updates because I think it creates a positive view of things, a positive
view while there’s so much bad information. You know that here’s a group of people working for the human
good and you’ve participated in it, you know. It’s uplifting really ()03"
Information on data governance
=(=3$)"1
' '8/0<
5
33'!''0<0/!3
!/0!8 $ <<830
/8<038"=
/' $
30 <'/!838/< "$
$$
!"03'7 8
: […]individuals worry more
about who possesses the right to access their health data (i.e., who, what, when, and why) than the
mechanisms used to safeguard data from unauthorized access" D
$ (
) 5 $
"
Information on ethical and legal aspects
. $ $
(=3$3)"=$
$ "
$ 3''0 $: :
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($$)0!"
Information on technical aspects
?(=3
$ )"6$ $$
"
Information on scientific aspects
.
$$$*'
333/0!883 (=3$!)".
/!/88'"
Specific content
= *$"D$
5"
=$
3 "
Table 4.=E
Type of specific
content
Motivation for receiving
this content
Exemplary citations of different stakeholders
extracted from reviewed studies
Information
updates on the use
of one’s data
[48,51,68,83,95,105
,110,131,138,140–
145]
To remain informed
'0<330
To remain engaged
'0/00/8 <
As a form of reciprocity
03/ !
I’d probably just want to be told that the study had
expanded a little bit… that it was something different.
Yeah, to keep everything above board. I would still say
go ahead and use it, but… provided that the patient is
aware.('0)
Concerning genetic data, all interviewees thought that
next-of-kin should be informed about the fact that
postmortem genetic data analysis is taking place and be
given the choice to be contacted about findings with
potential relevance for their own health, if no prior
preferences had been reported by the deceased"(C
"$! )
Well, it is all about giving and taking. You are giving
information about yourself, about your state of health,
in the end intimate details. And in return I want
something back […]. (03)
Information on
results from
individual tests
[41,51,54,64,69,70,
78,80,83,98,118,11
9,127,140,144,146–
For follow-up on one’s
health
!! /<80/ '
/
As a form of reciprocity
I never heard any results. Our specimens [are] just
being kept, being used however they might. What I
would like to see is if specific tests are run. I would like
to know the results" (
)
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154]
/0030 '
As a condition for
participation in research
0<03 0
To mitigate concerns
about privacy8
I thought it would be great if I could delve into the
relationship between my… genealogy and my cancer.
( ')
To participate in a study where you get specific results
would be very, for me, very positive. It would make me
feel that I’m contributing more instead of being lumped
into this mass of people. ( ')
Information on
global research
results of projects
that used one’s
data
[41,47,49,50,53,54,
69,76–
78,80,81,92,97,105,
118,127,128,135,13
8,143,144,146,155–
160]
For transparency and to
increase trust
3' 8!3///0088/<!
00 3
To help individuals or
communities make
informed choices about
their health
/!</08/8
As a gesture in return for
participation
!!3! /'00 3
!/
To share successes and
increase research
efficiency
//03<!30 3
If individual results are
not available '
[…] I think if I was to take part in anything like this I’d
like to be able to see how the research was actually
being used and its effects within society and how it’s
helping people; that would be quite important for me to
get something back"(03)
When asked directly if they would like to be informed
about the outcome of a data-sharing project in which
they are participating, almost 100% of the respondents
(99.7%) answer positively"(1"$
/')
Yes, okay, you’re going to share your data, but now we
want you to share the results, positive or negative… One
of the conditions for say getting our data is you have to
share it and that shareable thing can be shareable with
the public as well.(
30)
It makes you feel like…what you’ve done is helpful and
meaningful"(!/)
I’d like to know the results and whatever the issue is,
how we can help communities, how we can help one
another. Just what the next steps are. Where do we go
from here?(
)
I mean, I would prefer linked because obviously there’s
personal interest there, but if it’s done without that then
I’d still be interested in the overall results"($
')
Information on
the sharing of
one’s data
[11,45,48,51,60,62,
63,67,73–
75,78,80,81,83,86,8
8,95,99,100,105,11
3,115,118,119,121,1
35,140,141,143,155
,158,159,161–166]
To retain control over
future use
!'//3/!0030088
<<308 3!
!!8'!
To know who can access
or has accessed the data
'3/ 0<'
To enact ongoing consent
0'<8!<! <
I don’t need to manage it but do want to know who and
when they check my file. That way I can decide whether
grant access or not"( !)
Knowing what they’re doing or what they’re planning to
do. To know exactly what everything [is that] they’re
doing… and when and how it’s been used. Because, like
I said, because it’s her genes, her stuff—you know"
(!!)
One participant said they would need to know, ‘exactly
who, where, [and] how my information will be used
[…]’"(6"$$
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3
0<)
I’d like to be notified anytime anybody accesses my
medical records. Even if it’s my primary care
physician… I’d either be notified through email or
whenever you log on… When you log on, you should be
able to see a list of everybody who’s accessed your file.
If it’s electronic, you’d be notified if they’re trying to
access something that’s more confidential"(/ )
I think however they plan to [share the data] – they
should inform so that you know what they are doing,
and [where] it’s going to go – any method that they use"
('3)
Yeah well, I feel if it’s confidential it’s confidential… and
it’s anonymous, so… I suppose maybe I’d prefer to know
personally… but then if you never know it is going to be
released then it’s not going to bother you. But
personally, I would prefer to know"(')
I would like to be asked because if I think it’s important
and it can help some sick people to be healed, yes,
there’s no problem. But if I see that it’s not relevant and
that it could be a bit of anything, then I might refuse"
()
Information on
how to access
one’s data
[44,53,60,74,79,85,
99,100,109,111,129
,167,168]
To be able to analyze
one’s data
/ 8'/
To be able to verify one’s
data !3'</80!<8
To be able to withdraw
data0!'0
If they collect the data, you should have some sort of
report. You could say when something is missing"
(/8)
C$
(= $)E(= $ )"
Information updates on the use of one’s data
F
(= $)".
$$"D
030$ '8
/08 "
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Information on results from individual tests
+
(= $ ) $
!'!3
() /$
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03"+ A Because the most important thing is to find, um, is the
research itself. That’s the most important thing. So, to me, getting updates on what’s going on is a
nice to have, but it’s not a must have !/"D
8"
Information on global research results
4*E(= $3)$
"4
$ 30
" F
$ $$
E /008 "$
"D0<I3L
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research results !'"=$0"'L$
$2,&$3!"
https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
Information on how to access one’s data
$ E (= $ !) $
E
/80!!!"
#O F A Structures to allow individual access are
required to address inaccuracies in the data and to provide a sense of fairness and comfort in
knowing that there is some recourse to address problems"
How to communicate
.
(=!)"
Table 5.1E
Characteristic of
communication
Description Exemplary citations of different stakeholders
extracted from reviewed studies
Frequency
[11,18,33,36,38,49,59,74
,76,78,78,79,81,100,105,
125,140,156,171–173]
Periodically, on an
ongoing basis
333'30/ /'/0/80
<!'//
Linked to health care
encounters
0 8!8<<!
Upon request /0<!
The most appropriate approach would be to design
consents and notices that are like that as well— real-
time, updated, frequently communicating with you and
letting you know not only how your data is going to be
used and how it will be protected privacy and security
wise… I think a consent information type notice
should happen regularly [and] keep you engaged in
understanding the continued use of this data.
(
0)
At least once a year. If nothing else, you know what is
going on"(K.M+
//)
Maybe every half a year, or maybe even once a month
[…]. It would be good every six months to get follow-
up information"($/8)
I’d like to be notified anytime anybody accesses my
medical records. Even if it’s my primary care
physician… I’d either be notified through email or
whenever you log on... When you log on, you should
be able to see a list of everybody who’s accessed your
file"(/ )
What does the quantity look like? I mean, if we are
getting 10 emails a day, we might get annoyed"
()
Associated support
[11,19,32,36,40,41,43,45
–48,50–
53,56,59,68,69,73,74,76,
Support that is:
electronic
/3/ /'/0000
They [care providers] all use very strange words and
it's in one ear and out the other, and then when you get
home, you have forgotten. But now, you can check
again and you can look it up on the internet"(
https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
78,79,81–
83,85,86,88,90,92,95,10
0,103,105,108,114,123,1
27,129,132,133,138,139,
141,143,150–
153,155,158,160,165,17
1,172,174–183]
30<
delivered by mail
3!8/0!0
face-to-face
3!8/80338'
</!//
Support that is
delivered through:
technology
0!!
traditional
3 /!8<!
social media
00<03/
e-mails
30!0/
newsletters
'803/
academic and
health institutions
<0!<03
health
83 < !!<
!'!8'0'8/'00
3<<3 3!<
!3!!'!/ /
'/003 or
research 3//
professionals and
peers
!/'883
3!3
Examples of
technological supports
include:
patient portals
3!0/
/!
public databases
!3!0
websites
!3'803008<
/30 0
online FAQ section
00<3
short videos
3'<33/
/8
/!)
I like how it’s [the electronic version] broken up so it’s
easier to read. It’s less intimidating upon first glance
than a packet of paper.(/3)
If someone is telling face-to-face, it’s easier to
motivate or convince the person. But if it’s some odd
papers, sometimes you just skip the part that you
didn’t need. (/8)
Having a website is cost-effective because if people
are interested they can go on it and have a look; if
they're not then they don't have to. Leaflets and things
like that, I think, are expensive and unnecessary
because 95 per cent of them will just end up at the
bottom of a bird cage"(<!)
Well then you’d feel that you were doing something
that was very worthwhile wouldn’t you, you’d think
you were part of it, instead of just wondering what’s
going to happen, even a website we could come on and
just see what’s happening, to keep us updated"
(03)
[I]f there’s sort of a portal to a web-based feedback
that’s easy for physicians to use in the little time they
have during the day, that would be good"(
$3)
For me, it [consent portal]’s a must because it’s kind
of a control thing. I would be able to see who’s using it
and why"()
And if it works for me, I can point [to] my other
nephews and cousins and everybody else and say: ‘Go
try this out. Go see these people.’ Because I want to be
a spokesman and I will say, you know, ‘This is what
works. This is how I combat this or that.’ And I’d have
an avenue to say, ‘Hey, go try that program out’.
(8)
[…]to perceive leaflets as light reading while
awaiting their appointments: ‘People pick them up
and read them while they are waiting and them put
them back’. (!8)
The problem I have is that not everybody has a cell
phone. Not everybody has access to electronics, and
probably the people who are most underserved are
those people. Probably the socioeconomic group odds
are they don’t have money to buy these fun things, or
they don’t have the education to be able to use them.
So they’re left in the dark, and they’re probably the
ones that are most easily taken advantage of.
( )
https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
mobile
applications
/30'
Examples of physical
support included:
posters
3'8!3/'0
flyers
'!3!8333
/'
Format
[33,55,56,65,72,73,91,10
3,116,127,160,167,174–
176,184,185]
Brief
/'<'// /'
Interpreted
!!//!/'0 0
!
Layered to permit little
or more information
33!'/38<3/
If someone can answer, ‘Here’s where it’s stored,
here’s how we use it’ in simple ways, not this 30-page
agreement. Very simply […]" (:
'/)
I sort of wish that I could provide some second
bulleted point of one page that was like, ‘In plain
language this is what you've just agreed to’.
(/)
The average person might not understand the meaning
of all of [the results] so [results] would have to be
returned in a format they can relate to.(
/)
Wording
[11,31,32,39,44,46,51,54
,56,63,65,70,72,73,76,79
,81,87,92,93,99–
101,103,105,111,114,127
,130–
132,134,139,143,160,16
7,172,173,175,176,186–
188]
In accessible, plain
language
'!''!//3/'/
800/88388<<<
3<! /3<
33 38'<'//3
/!/'00
Attention to levels of
literacy
3!'3//'
0/
Use of mother tongue
!/<800
Attention to special
needs< 3/'
Attention to cultural
competency
!830'
Attention to tone
! <3
With explicit language
38'!0<30/ use
Researchers should state exactly what is being done
with data and make it simple for people to understand.
(583)
This [Health Care Information Directive] is too busy,
it’s too much. If I’m sick, I friggin’ don’t want to be
bothered with it.... Look at this. English is my first
language. How would somebody whose mother tongue
is something other than English? [sic] It’s too
complicated"(5<<)
In terms of getting the information out to Alaskan
Native people, just providing this in a very clear
manner about what it is, what it means, what it can do
for our system, what it can do for them individually.
So, I think that, again, transparency is really huge"
(8)
https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
of visual supports
<3/'and examples
<3/'
Impartial and
uncensored3
Communication approaches that are ongoing and varied
6$(=!
$)$5$
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become patients "6$
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(=!$)"=$
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= $
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?5(=!$)"2
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2 1 08 :
!/ "4 /8 5 $ as a starting point to meet all
requirements for sharing personally collected and controlled health data for research /8"
I /0$
[…]instead consider using communication strategies that use iterative inquiry to
learn about and engage communities in which they [researchers] wish to conduct research"
https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
Format
$$
($)(=!$3)"D
3L$$$
$ A
information about medical research is not accessible to me <"
:$$$
"=$$$
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.$(=3$ )"& /'
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When to communicate – Situations where communication becomes
necessary
#$
$(=')"=
(=3: )$(=!)"
Table 6. . $
E
Situations Description Exemplary citations of different stakeholders
extracted from reviewed studies
Before the reuse of
data
[40,53,59,67,74,80,
81,86,91,97,108,13
8,144,145,152,158,
166,167,190–193]
To exert control on the
secondary use of one’s
data
<'/08!8<8
83
When the reuse
involves the private
sector
The most appropriate way is to inform the patient every
time their data moves to the researcher or moves for a
purpose and give them a chance to opt out or opt in each
time. It may not be the most ideal for the company, but it’s
much more ideal for the patient"(
0)
I don’t like it [one-time broad consent]" That’s just me
because I mean it’s just like you sign the form once and
https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
!308/!08
When a minor
participant reaches the
age of majority'/8<
When the data are
sensitive!3!8/
In the context of public
health emergencies
when consent is not
required<0
you never see it again and then later on in life it ends up
biting you in the ass cause well you signed the form once
and you never saw it again. But someone goes out and
dusts off your records and says, ‘Hey look here.’ I’m like,
‘Well Goddam I guess I did sign it.’ And you can’t do
anything about it. There’s no option.( <)
I’m down with that… People can do whatever they want
with our data… But what you’re trying to tell me is you’re
now doing research that will put my name back on the
data I gave you. In a way, you’re not just doing research
on my data. You’re doing research on my data that will
add data to my data that I didn’t give you for a reason"
('/)
In an ideal world I would include that a company, when
they share and sell the data, would need to have a site
that users could access to see with whom their data has
been shared.(
0)
When individual
results become
available
[51,54,56,69,81,83,
91,98,144,194]
Results that are
actionable
0038 or not
!'
Incidental findings with
clinical relevance
! 8 or not 8
Yes, definitely. The reason that this [cardiac arrest]
doesn’t bother me anymore in daily life is that the blood
clot was taken out and they explained to me what had
happened. What had gone wrong in my body. I could see
it clearly on the monitor during the catheterisation. So
you finally know what it was that made you feel unwell.
That was really nice. So in ninety percent of the cases I’d
say, ‘tell me everything you can find about me, please’.
(! )
Well, I was pleased with it and I’m a bit like, that’s one of
the incentives for me to go in for I was interested to know
how well I was and I was also interested to know about
my cholesterol as well because my father had really,
really high cholesterol and I’ve never had mine done, so I
thought, ‘well, that’s a way to find out what mine is’.
(03)
I would have liked to have had a more detailed summary
than we actually got. I think there were other things that
they could have given and, for example, had there been
any major medical problems I think it would have been
good if they’d have pointed those out at some stage or
other"(03)
It may not be a guarantee that this will happen, but one of
the key issues in a disease such as this... is early
identification and spurring people to action. Melanoma is
probably one of the cancers that kills a lot of people, I
would imagine because they aren’t aware of it and don’t
act early enough… So, if he has an algorithm that’s more
than 50% accurate, it’s imperative that he let the
individuals be aware.(
0)
If that gentleman thinks he’s the carrier for something and
he’s not, he needs to know that. (
https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
*8 )
When new global
research results
become available
[76,78,98,129,144,1
56,158,186]
To maintain trust and
community engagement
0'
Research conclusions
may influence a person
808 or a
community’s actions
/'0'
[…] a lot of the researchers were always promising
verbally that they were going to share the information
with you and... more than half the time they never see that
the results of the data after they leave your community.
That’s part of the reason why a lot of the Natives in small
communities don’t trust the researchers"(
)
In the occurrence
of a breach in
confidentiality
[52,73,97,164]
If my health information is compromised, how will I be
informed?(/3)
If you do the wrong thing, you should face the
consequences… then maybe they won’t do it again"
(5*8/)
Certainly, there is reportability back to the Institutional
Review Boards [IRB]. There is probably reportability
back to our audit committee of our board, which oversees
compliance in Health Insurance Portability and
Accountability Act [HIPAA] at the very minimum,
depending if it’s identified... I mean, it could go all the
way out to notification... Certainly notification to the
patient if it's identified, but also perhaps the government
agencies. (!)
Before the reuse of data
('/L)
0'83$$!3/
(='$)".$88!"
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indicated that their tissue samples should never be used or that they must always be asked if profit is
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=
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https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
Discussion
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https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
Interpretation of findings
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https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
are basedGHAenabling public participation in decision-making processes
GHAdecision-makers are held accountable"9+$
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JMIR Preprints Cumyn et al
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JMIR Preprints Cumyn et al
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https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
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https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
Authors’ contributions
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Conflicts of interest
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References
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Nature"<;'<!(/8<0)A0:03"A<"<30J !0':<:<<!:<
'" 1+I4C+1+?2B6"15421
?4E+=$1.K
,IA4#>,."J Empir Res Hum
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JMIR Preprints Cumyn et al
Res Ethics"<;'(3)A'!:/0"A<"//J!!'' '88
/" %.MIB>?I5+.+"FA
K7 K.+" Lancet Digit Health" <<;(8)A : '"
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Behav Soc Netw"<; (8)A'/:'3"A<"<08J"<<"<'<<
<" ? M 1IB" F - 4
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Abbreviations
HCID: ,1I
HIPAA: ,F++
IRB:4$C
LHS:>,.
PRISMA-ScR:F4.4$?:+
.4$
REB:42C
https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
Supplementary Files
https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
Figures
https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
Flow diagram of the selection process. *Restricted to publications in the last two years for most recent indexation.
https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
Summary of the scoping review's findings.
https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
Multimedia Appendixes
https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
JMIR Preprints Cumyn et al
Search strategies.
URL: http://asset.jmir.pub/assets/8eaee1d12122849f379b365749928b6f.docx
Characteristics of the articles included in the scoping review.
URL: http://asset.jmir.pub/assets/dec9c7ad2d3d2f78e1bdf2a8b555b3e6.docx
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https://preprints.jmir.org/preprint/45002 [unpublished, peer-reviewed preprint]
