1.
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Membership
Survey on
‘Patient Data'

2.
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Date Created: Wednesday, March 13, 2019
103
Total Responses
Complete Responses: 101
Deadline: Sunday, March 31, 2019
Average time taken: 6 minutes, 50 seconds

3.
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Q1: Are you an IPPOSI member?
Answered: 101 Skipped: 0

4.
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Wordcloud of Member Organisations represented
No more than 3 from any individual organisation

5.
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Q3: Which of the following best describes you?
Answered: 102 Skipped: 1

6.
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IPPOSI Members Non-Members
Q3 breakdown:

7.
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Q4: How familiar are you with how patient data is currently collected, stored, shared and used
to bring improvements to health care and/or for research purposes?
Answered: 103 Skipped: 0

8.
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Q5: To what extent to you agree with the following statements?
Answered: 103 Skipped: 0
It is important for patients to be able to manage their own personal health
data (e.g. to be able to view test results, request referrals, share data with
professionals and researchers via an electronic health record)
I have a good understanding of what an Electronic Health Record is
I have a good understanding of what a Summary Care Record is
I am familiar with the government's eHealth Strategy
The government has effectively engaged with patients and the public in
pursuing its current eHealth agenda

9.
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Investigating the potential of data-driven technologies
(e.g. genomic data, diagnostics, patient registries, artificial intelligence)
Improving Data Quality & Infrastructure (e.g. 'Cleaning' of data, fragmented systems,
outdated IT resources, burden on professionals)
Addressing Trustworthiness in use of data
(e.g. Commercial interest, Who benefits?, Effective regulation, Do no harm)
Probing Data Privacy & Protection
(The role & limits of consent, Levels of control, Personal nature of data, Confidentiality)
Encouraging Public Dialogue
(national level, empowering patients, building confidence, engaging 'seldom heard'
Encouraging Collaboration between Sectors
(calling for leadership, frameworks, guidelines, regulation between sectors)
Providing clarity and clear messaging about patients' rights and whether data can be
shared/used on a consent / opt-out basis
Q6: To help us identify the 'Patient Data' topics of most interest to members, please indicate
your interests from the list below, ranking 1-7, with 1 being the topic of most interest).
Answered: 103 Skipped: 0 [ Figures represent number of responses ]

10.
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Q7: Are there any additional topics you would like IPPOSI to focus on? (1)
Patient Representation / Awareness
• Patient preferences for eHealth initiatives.
• Appropriate patient group representation to input into any National eHealth
initiatives, pilots, proof of concept, strategy, framework development.
• Increasing awareness on this issue - good practice examples, benefits to
all etc
Service Planning
• Utilising aggregate data for better future planning, trends,
incidence/prevalence, demographic info, medication usage etc
• Improving/ Linking patient data sources e.g. PCRS data to EHRs etc...."
• Patient reported outcomes
Other
• Importance of coding of disease groups and conditions to allow ease of
data mining and electronic registries
• Training staff on safe use of the records to ensure consistency and
compliance
Inte
grat
ed
care
no
Tran
slati
on of
clinic
al
rese
arch
to
activ
e
trea
tme
nt.
Data
infra
struc
ture,
IT
archi
tect
ure
and
intra
oper
abili
ty.
Cont
act
Prof
Pam
ela
Huss
ey
at
DCU
to
discu
ss
data
dicti
onar
y
deve
lopm
ent.
Data
shari
ng is
usel
ess if
it
isn’t
possi
ble
to
use
it
beca
use
the
syst
ems
don’
t
talk
to
each
othe
r.
No
The
lack
of an
inte
grat
ed IT
syst
em
bet
wee
n
hosp
itals
clear
ly
lead
s to
a
lack
of
mobi
lity
of
pati
ent
data
,
cons
trict
s
own
ershi
p
and
limit
s a
pati
ents
abili
ty to
mak
e
choic
es
abou
t
their
own
trea
tme
nt.
At
this
stag
e
Irela
nd is
one
of
the
only
EU
coun
tries
with
out
an
inte
grat
ed IT
syst
em
and
relat
ive
nati
onal
pati
ent
iden
tifier
s,
whic
h
mea
ns
that
the
roll
out
of
new
tech
nolo
gies
such
as
Next
Gen
erati
on
Sequ
enci
ng,
Artif
icial
Intel
ligen
ce
etc
will
be
very
limit
ed.
No
Pati
ent
pref
eren
ces
for
eHe
alth
initi
ativ
es.
Appr
opri
ate
pati
ent
grou
p
repr
esen
tatio
n to
inpu
t
into
any
Nati
onal
eHe
alth
initi
ativ
es,
pilot
s,
proo
f of
conc
ept,
strat
egy,
fram
ewo
rk
deve
lopm
ent.
Oste
oart
hriti
s,
ofte
n
dism
issed
.The
attit
ude
is :
its
just
your
age,
whic
h is
not
true
in
my
case
To
mar
k
Worl
d
Ovar
ian
Canc
er
Day
May
8th
Havi
ng a
conf
eren
ce
relat
ing
to
tran
slati
onal
rese
arch
for
rare
dise
ases.
Scie
ntist
s
with
a
tran
slati
onal
visio
n
and
trac
k
reco
rd in
brin
ging
rese
arch
from
benc
h to
beds
ide.
Ther
e is
muc
h to
lear
n
from
thes
e
kind
of
peop
le
Pati
ent
invol
vem
ent
in
care
Inte
grat
ed
care
no
Tran
slati
on of
clinic
al
rese
arch
to
activ
e
trea
tme
nt.
Data
infra
struc
ture,
IT
archi
tect
ure
and
intra
oper
abili
ty.
Cont
act
Prof
Pam
ela
Huss
ey
at
DCU
to
discu
ss
data
dicti
onar
y
deve
lopm
ent.
Data
shari
ng is
usel
ess if
it
isn’t
possi
ble
to
use
it
beca
use
the
syst
ems
don’
t
talk
to
each
othe
r.
No
The
lack
of an
inte
grat
ed IT
syst
em
bet
wee
n
hosp
itals
clear
ly
lead
s to
a
lack
of
mobi
lity
of
pati
ent
data
,
cons
trict
s
own
ershi
p
and
limit
s a
pati
ents
abili
ty to
mak
e
choic
es
abou
t
their
own
trea
tme
nt.
At
this
stag
e
Irela
nd is
one
of
the
only
EU
coun
tries
with
out
an
inte
grat
ed IT
syst
em
and
relat
ive
nati
onal
pati
ent
iden
tifier
s,
whic
h
mea
ns
that
the
roll
out
of
new
tech
nolo
gies
such
as
Next
Gen
erati
on
Sequ
enci
ng,
Artif
icial
Intel
ligen
ce
etc
will
be
very
limit
ed.
No
Pati
ent
pref
eren
ces
for
eHe
alth
initi
ativ
es.
Appr
opri
ate
pati
ent
grou
p
repr
esen
tatio
n to
inpu
t
into
any
Nati
onal
eHe
alth
initi
ativ
es,
pilot
s,
proo
f of
conc
ept,
strat
egy,
fram
ewo
rk
deve
lopm
ent.
Oste
oart
hriti
s,
ofte
n
dism
issed
.The
attit
ude
is :
its
just
your
age,
whic
h is
not
true
in
my
case
To
mar
k
Worl
d
Ovar
ian
Canc
er
Day
May
8th
Havi
ng a
conf
eren
ce
relat
ing
to
tran
slati
onal
rese
arch
for
rare
dise
ases.
Scie
ntist
s
with
a
tran
slati
onal
visio
n
and
trac
k
reco
rd in
brin
ging
rese
arch
from
benc
h to
beds
ide.
Ther
e is
muc
h to
lear
n
from
thes
e
kind
of
peop
le
Pati
ent
invol
vem
ent
in
care
GDPR / Health Research Regulations
• Impact of health research regulations.
• How to get consent from patients in healthcare setting for retrospective chart reviews for research
before May 2019 deadline for data controllers to do this.
• GDPR
• The health research regulation and ensuring that the spirit of original patient consent is respected
so that biobanks which pre-date the regulation but meet an appropriate standard of pre-GDPR
consent are still viable
• Use of data for research purposes
• Easier use of anonymised patient data in research and dissemination of findings.
Access to Data/Records
• Patient Portal
• Patients have access to their medical records and those of their children - electronically
• Easier access to / sharing data with expertise abroad if there is lack of knowledge in Ireland
• More constructive access for treating professionals across hospitals etc, while maintaining high
spec confidentiality and data safety.
• Streamline patient access to records/data.
Integration of Data / Records
• The lack of an integrated IT system between hospitals clearly leads to a lack of mobility of patient
data, constricts ownership and limits a patients ability to make choices about their own treatment.
At this stage Ireland is one of the only EU countries without an integrated IT system and relative
national patient identifiers, which means that the roll out of new technologies such as Next
Generation Sequencing, Artificial Intelligence etc will be very limited.
Data Quality / Infrastructure / Interoperability
• Data infrastructure, IT architecture and interoperability. Data sharing is useless if it isn’t possible to
use it because the systems don’t talk to each other.
• Ensuring correct data collection, robust systems to ensure accuracy of information.
• Linkage of datasets for epidemiology purposes and long term clinical care planning.
• Development of a 'core dataset' that is standard across all datasets (e.g., gender, age, ethnicity,
GMS status, deprivation level as assessed by small area deprivation etc). Data that has both
'process' outcomes and clinical outcomes.

11.
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Q7: Are there any additional topics you would like IPPOSI to focus on? (2)
• Create paid advocacy roles. Most patient advocates work
full time while also providing care for themselves or their
loved one, it's exhausting and not sustainable.
• Patient access to clinical trials
• Translation of clinical research to active treatment.
• Having a conference relating to translational research for
rare diseases.
• Integrated care
• Patient involvement in care
• Building confidence within people re health research
• Capacity to consent for younger or incapacitated individuals
• How to improve patient access to clinical genetic centers
(overhaul criteria for patient referral )
• PPI and the role of patients, more events and fora for
patients and researchers and policy makers to collaborate.
• More involvement on the ground at a local level throughout
rural Ireland
• Facilitating greater direct interaction with patients and
researchers
• Patients speaking out on their own experiences with their
chronic illness
• Educational guides
• Recognition of invisible illness as disability. Quality of life
issues for patients with chronic illness. Access to Long Term
Illness Scheme and other social supports

12.
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Q8: Are there any topics you would like IPPOSI to avoid?
• Alarmist - public negative sound bites
• Not that I can think of
• PPI, there is much going on in this space. Conserve time and energy here
• None. Keep doing the good work.
• GDPR - it is frequently used as a smokescreen to prevent the appropriate sharing of data with consent
• No - all should be considered and explored. Priorities should be identified and then progressed.

13.
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Q9: What specific kinds of activities would you like IPPOSI to do in 2019? Please
give your top 5 priorities, ranked 1-5, with 1 being the most important.
Answered: 102 Skipped: 1
Raising public awareness on the benefits and risks of patient data sharing
Developing patient education content (e.g. Digital Health Literacy)
Providing training for professionals in healthcare, academia, industry
Developing + Advocating patient-led positions on patient data sharing
Bringing a patient-led narrative to eHealth initiatives/committees
Influencing relevant health policy, legislation, regulation, guidelines
Engaging with the broadcast/journalist media on patient data
Organising multi-stakeholder workshops and events

14.
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Q10: With your consent, how likely are you to agree to your personal
health data being collected, stored, shared and used for:
Answered: 102 Skipped: 1