In Electronic Health Records We Trust - IPPOSI Outcome Report - March 2017

PATIENTS – SCIENCE – INDUSTRY
“In Electronic Health Records We Trust”
Patient-led Workshop
Healthcare Informatics Society of Ireland (HISI) National Conference
AVIVA Stadium, November 2016

Workshop Participants
• 75 participants incl. 20 invited IPPOSI patient member contributors
• 4 Guest Speakers- Ingrid Brindle, Amir Hannan (both Haughton Thornley Medical Centres),
Tony Shannon (Ripple OSI), Ros Moran (Health Research Board)
• 6 Chairs- Michelle Kearns (CCIO), Dmitri Wall (Irish Skin Foundation), Ingrid Brindle, Amir Hannan,
Tony Shannon, Ros Moran
• 6 Facilitators- Harriet Doig (MS Ireland), Olive O Connor (Medistori), Avril Kennan (Debra
Ireland), Rachel Lynch(FibroIreland), Rita Darcy(OOCIO), Hannah Fitzgerald (Trinity College Dublin)
• Organisers- Derick Mitchell (IPPOSI), Gaye Stephens (Trinity College Dublin)

What is an Electronic Health Record?

Electronic
Healthcare Record
(Longitudinal)
Digital
Information
collection
Hospital
Imaging Systems
Hospital Information Systems
Laboratory Information Systems
Specialist Systems
Nursing
Homes
Nursing Home Systems
Patients/Carers
Wearables
Insideables
Devices
Sensors
National
Systems
NIMIS
Lighthouse Projects
In
Transit
Ambulance Systems
Rescue Services
Community
Clinicians
Public Health Nurse system
Pharmacy System
GP System
AHP System
Researchers
Data Analysis systems
Clinicians
NIMIS
HIS
LIS
Patients Systems
Patient
Organisations
Registries
Health
Service
Management Systems
Patients/Carers
Patient Portal
Patient Systems
National
Registries
Birth Registries
Death Registries
Cancer Registries
……………….
National
Bodies
Mental Health
Commision
………
Use
Cases
Community
Of

Stakeholders
Data
DefinitionsIdentificationTo
Ensure
Quality,
Safety
and
Value Consent

What do Irish people think?
http://www.ipposi.ie/our-‐work/publications/public-‐attitudes/

http://www.ehealthireland.ie/Library/Document-‐Library/new-‐documents/ARCH-‐Report-‐on-‐the-‐EHR-‐Public-‐Consultation-‐.pdf

https://ayogo.com/blog/patient-‐engagement-‐definition/

Themes
1. Data sharing & use
2. Patient-clinician relationships
What contributions do patients want to make?
Challenges?
Opportunities?
Building trust between patients / service users + other
stakeholders in the development of EHRs in Ireland

General Question:
What are the benefits for patients?
• From having your health data stored in one place?
• From sharing your information and data?
• for research
• for evaluating and improving health, social care services?
• From how it affects the relationship with your clinician?

Wordcloud Common Themes
Trust
Patient
Experience
Education
and
Training
Collaboration
Communication
Timing
Sharing
Community
Access
Consent
Data
Quality

Opportunities identified that EHRs will bring for patients
• Involvement in our own care
• Empower ourselves and our families
• Improves ability to collect better / good data
• Management of prescriptions by Pharmacist
• Complete the information in the EHR
• Apps to manage complex medications and multi-medications
• Timeliness of care
• Management of care as disease progresses + through transitions of care
• Potentially improving access to clinical trials

Development

of
Electronic

Health

Records
(10
years)
National
Education
/
Training
on
EHRs
For
clinicians,
nurses
and
Patients

By
clinicians,
nurses
and
Patients
Capacity
Building
/
Empowerment
of
patients

Link
to
self-‐management
programmes
OPPORTUNITIES
FOR
PATIENT
INVOLVEMENT TO
ADDRESS
THE
FOLLOWING
CHALLENGES
EHR
Design
+
Roll-‐out
Patient
Portal
Other
building
blocks

Decision-‐making
boards
Promoting
Partnerships
with
Clinicians,
Nurses
Communication
Openness
&
Transparency
Advocating
for
essential
building
blocks
Real-‐Time
information
Informed
Consent

Bi-‐directional
flow
of
information
Tracking
patient
outcomes
Public
Trust
+
Confidence
Who,
When,
Why?
Consent
– How?
Special
Considerations
for
individual
groups
Data
Linkage
&
Sharing
Trust
Patient
Experience
Education
and
Training
Collaboration
Communication
Timing
Sharing
Community
Access
Consent
Data
Quality

A ‘flavour’ of discussions

Theme A - Data Sharing and Use
Common
Themes:
Trust
Patient
Experience
Education
and
Training
Collaboration
Communication
Timing
Sharing
Community
Access
Consent
Data
Quality

Theme A- Data Sharing and Use
Flavour of Trust
• Concerns expressed on who is accessing the record
• Increased transparency is required on the use of data, the benefits to patients
and the consequences for any breach in confidentiality
• A national data protection oversight body or Trust would be very valuable
• Need to communicate patient concerns to the general population prior to roll out
- use clear language and use images or story boards
• There are some good examples of relationships with pharmaceutical companies
and how data from registries can be shared with them, but not for commercial /
marketing purposes – e.g. Cystic Fibrosis
• Security Issues need to be acknowledged and addressed

Flavour of Community
• Acknowledged that there are cultural challenges around partnerships between HCPs and patients (e.g.
who has ownership and control of information)
• Opportunity for patient and community organisations to be linked in to the EHR in order for patients and
health professionals to find each other
• There is a need for a co-designed EHR; one for acute settings, one for primary care - and at the centre, one
for patients – of which summary care reports or correspondence can feed in to. The patient is the only
common denominator between all of their health professionals.
• Huge passion in the eHealth industry and belief in their products – they want to work with the HSE
• Technical challenges around getting IT systems operational (e.g. there is currently no ‘basic’ platform in
Ireland that ehealth companies coming in can use to ‘plug and play’)
• The EHR should work to reduce, not increase the workload of nurses, doctors, etc.
• Support for data controllers is required
• Patients and professionals need to work in partnership to make this happen
• All stakeholders involved should be in the same room when designing the EHR – not separate working groups
e.g. CCIO should have patients in its group

Flavour of Sharing
• Most patients are happy for their data to be shared if there is
transparency around how it will be used and they have
confidence that it will bring genuine benefit to them and others
with their condition
• Acknowledged that there is also variable willingness to share
patient data depending on disease, context and life situation
• Development of rules and codes of conduct for data sharing +
linkage will be important

Flavour of Timing
• The opportunity for the EHR is that it is for all people, from birth to end-of-life, and that it would need to
cater just as much for the healthy as the unwell (e.g. at any time in life people can become unwell)
• Real time information is required to facilitate health professionals when making accurate decisions with
their patients.
• Issues arose concerning monitoring and evaluation the progression of conditions
• If patients and health professionals could track outcomes and feed into the EHR this would improve
patient’s future health and be useful for research
• Patients should have a portal with relevant medical clinical information for which emergency services
or family members can access
• Allow up to date information regarding specific rare conditions to be easily accessed by health care
professionals at the point of care for shared decision making
• For out-of-hours services, information should be shared between GPs, with the consent of patients

Flavour of Data Quality
• There is a lot of data and data systems out there, but how do we identify what data is good
or useful?
• There were concerns that certain cohorts of patients or age groups would be the only ones
used for research
• There is an opportunity for information to be in the EHR for ethics boards
• Opportunity to capture qualitative data e.g. patient experiences, concerns, symptoms
• It was deemed important that information from the EHR could be population-based, in line
with other areas (e.g. pollution and its impact to health and wellness)
• Opportunity to combine data sets with patient representative groups and the EHR
• The EHR needs to be free from technical jargon, and possibly approved by NALA
• Standardisation of IT systems across the healthcare system is a good place to start

Flavour of Access
• The question arose about concerns the public may have in relation
to “When, Why and Where” a patient’s personal information is used
• There is an opportunity to discuss this at the policy level and through
education (i.e. inform the public via PR and workshops) that a
health professional will need to know the person whom they are
dealing with, and therefore require personal information, but
researchers should not need to know the person’s personal
information and so this information should be anonymised
• Concerns expressed regarding patients accessing & using record

Flavour of Consent
• A need for explicit consent to be built into the EHR policy and that
this should be reviewed at different stages (maybe build an
algorithm into it if certain criteria arises)
• Legislation needs to facilitate data sharing between legal entities
e.g. GP and hospitals, with patient consent
• Anxiety on the part of patients around disclosure and how their
information will be used – particular mention was made about fears
of data being passed to pharmaceutical companies for use for
commercial purposes

Flavour of Education and Training
• There is an opportunity to gain insights into patients’ own
knowledge
• Education for health care professionals on what information
patient’s need and are able to retain needs to be part of the
implementation of EHR
• Opportunity for education on what “consent” is
• National education programmes relating to health data and
EHRs would also be valuable

Theme B- Patient Clinician Relationships
Common Themes:
Trust
Patient
Experience
Education
and
Training
Collaboration
Communication
Timing
Sharing
Community
Access
Consent
Data
Quality

Theme B -Patient Clinician Relationships
Flavour of Patient Experience
EHR has the potential to improve:
• Time efficiencies and continuity of care
• Communication of plans – e.g. End-of-life care
• Transition from child to adult services
• Integrated care – inclusion of parents in care
• Inequality of services
• Lack of repetition and replication of tests, and also patients
having to constantly give same information when visiting
healthcare professionals

Flavour of Trust
• Definition of ‘Trust’ – What?, Who?, Why?
• The EHR can lead to the building of ‘trust in oneself’
to manage ones own health and healthcare
• Fear of litigation apparent in many relationships

Flavour of Collaboration
• Promote integration of care across different settings, in particular for
complex conditions
• Burden on HCPs needs to be addressed – often there is too much
information in EHRs
• ‘System’ interference: i.e. the system that interferes between the
clinician and patient. There is not enough information in this system,
and the ability to use the system is not equal
• People who experience difficulties accessing services should be a
key focus
• Rare diseases – need clearly identified pathways – a relatively
straight forward to process map
• Management of patients with multiple symptoms is a challenge

Flavour of Communication
• Openness is a key principle:
• It starts a conversation towards being able to view information together
• It allows patients to view information before appointments – to know what questions to ask
• After appointments, patients will be able to refer back to see what was discussed /
recommended
• Fear was expressed in relation to:
• Diagnosis – finding out from the EHR instead of from a clinician
• Breaking news to the patient
• Needs to be a standardization of terminology between clinician and patient
• Empower the family and the patient together

Flavour of Data Quality
• EHR improves ability to collect better / good / more up-to-date data
• How to document and communicate with a patient-focus in mind is a
challenge for doctors, nurses, etc.
• Making sure the information in an EHR is complete and updated is
essential

Flavour of Consent
• Concerns were expressed regarding consent for data being
inputted and being shared
• i.e. children cannot consent and there are instances where a person in
the first instance did consent, but at later stages may be in situations
where it makes it more difficult to make decisions to give consent (e.g.
in labour, cognitive impairment etc.)
• Bringing families on board in relation to the EHR may improve their
willingness to consent to access and use child record

In Electronic Health Records We Trust - IPPOSI Outcome Report - March 2017

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In Electronic Health Records We Trust - IPPOSI Outcome Report - March 2017