This document summarizes a presentation about improving healthcare communication for children with cerebral palsy and communication disabilities. It discusses using technologies like personally controlled electronic health records to help families be more involved in healthcare decision making. It outlines strategies identified in research to improve communication in healthcare settings, including devoting enough time, ensuring access to communication tools, and increasing staff competency. Future research directions are proposed around uptake of eHealth technologies and supported decision making. Clinical implications focus on involving children and parents, using technologies like PCEHR, and developing health literacy and self-advocacy skills.

1. Children and young people with
cerebral palsy and communication
disabilities: charting the course for safe
care
Bronwyn Hemsley, Ph.D.
The University of Newcastle
#TweetReach
#myHealthTransit
Part II in a series on eHealth; Perth, June 4th, 2015

2. Acknowledgements
O Stuart Palmer
O Stephen Dann
O Linda Worrall
O Leanne Togher
O and all other
associated
investigators
O and all participants in
our research to date
O Susan Balandin
O Andrew Georgiou
O Sophie Hill
O Ben Kraal
O Meredith Allan
O Isabel Higgins
O Shaun McCarthy
O Megan Rollo
O Joanne Steel
O Natalie Adams
NHMRC funding, Australian Research Council Funding, funding of
The University of Queensland and The University of Newcastle

3. Are you in Twitter? De-Lurk for today
to find each other #myHealthTransit
#WeSpeechies #HospitalComms #TweetReach @bronwynhemsley

4. Overview of this talk
O Health care communication experiences
of children and young people with cerebral
palsy and their families
O The potential for communication
technologies to improve engagement in
health from a young age.
O Clinical implications for children, parents,
and health professionals will be presented
along with directions for future research.

5. What do parents want?
• To be involved in decision-making process
• Open dialogue on risks and benefits of therapy;
• To choose the most applicable and feasible therapy
• Info on any necessary post-therapy support and funding
and its availability; and any additional impact of the therapy
(on load; life).
Would eHealth technologies and decision-aids help?
PCEHR + Decision Aids on Interventions
Better evidence
Better access to evidence + its appraisal
Would communication aids / health literacy aids help
children to take part?

6. • Families would like more emphasis on family
centred goals that are mutually agreed on by
clinicians, therapists and families.
• This would ideally involve discussions about
other aspects of the child’s life, and set
appropriate and achievable goals accordingly.
Naturalistic interventions that are feasible
in the everyday life of children with cerebral palsy and their
families
Child’s priorities and goals?
What do parents want?

7. O Consider the impacts of therapies on the
child and family more broadly:
O current family capacity and mental health,
O social and participation consequences, and
O overall quality of life.
‘Cost’ ‘Benefit’ Analysis of interventions
(compared to current)
‘social cost’ and ‘social benefit’ of interventions
What do parents want?
To know the costs and Benefits of All
Options

8. Children with multiple service
providers/supports
O The family and its supports
O The community and its services / members
O Disability service providers / supports
O Education services / supports
O Health service providers / public health supports
Conversations about or affecting health (and health
literacy) happen everywhere.

9. Children with CP encounter many
‘unfamiliar listeners’ in health settings
• The parent is key (common)
• The child is key (central)
• The methods of communication may vary
• The need and opportunity to communicate will vary
(demands, chances)
• Communication access will vary: environmental
barriers & facilitators to communication (knowledge,
attitudes, time, confidence, tools)

10. The ‘Child Transitional
Communication Model’ (Lambert)
OThe parent’s role is often to ‘speak for the
child’ in health appointments. Some things
cannot be known by proxy, but parent
interprets/guesses.
O However, children are also asked questions
directly “how did that happen to you?”
OChildren like to move back and forth from the
‘background’ to the ‘foreground’ in their
interactions with parent/healthcare provider.

11. Communication between children and health professionals in a child
hospital setting: a Child Transitional Communication Model; Veronica
Lambert, Michele Glacken & Mary McCarron, 2010.
Journal of Advanced Nursing
Passive bystander
Active participant
Family centred care
Shifting power relations
Universal progression v Guided participation
Rights negotiation: Protection v Participation
Being overshadowed
Being at the forefront
Child as becoming
Child as being
Visibleness
Child ‘being’
and
‘becoming’
Artistic representation of model/adapted from original.

12. Strategic Competence
O Healthcare settings offer a variety of unique
opportunities to develop and use skills to
develop
• Health literacy
• Engagement in supported decisions
• Self-advocacy and Self-determination
• Digital literacy / documentation / information
exchange / information management
O How will the child gradually develop
‘healthcare communication competence’ ?
O Which opportunities are to be made/taken as
the child grows with a lifelong condition?

13. Communicating in health settings

14. Lit
Review
We located 18 studies meeting the
inclusion criteria (16 adult / 2 child):
In English, Peer Reviewed Journal
Article, Original Research, Including
all 3 concepts: Severe communication
disability / Communication / Hospital
16 Qualitative Studies
1 Survey
1 Medical Record
Review
We made a
‘table of
included
studies’ showing
characteristics
of the studiesWe looked
across these
studies to create
‘Content Theme’
Categories

15. Six Core Strategies Across Studies:
Suggested to improve communication
1. develop services, systems, and policies that
support improved communication
2. devote enough time to communication
3. ensure adequate access to communication tools
(call systems and communication aids)
4. access personally held written health information
5. collaborate effectively with carers, spouses, and
parents
6. increase the communicative competence of
healthcare staff

16. Personally Controlled Electronic
Health Records (PCEHR)
[myHealth Record]
Hemsley, B, Georgiou,
A, Hill, S, & Balandin,
S.
An NHMRC Project Grant 2013-2016 APP1042635
eHealth

17. 17
“A personally controlled eHealth record is a secure online
summary of your health information. You control what
goes into it, and who is allowed to access it. Your eHealth
record allows you and your doctors, hospitals and other
healthcare providers to view and share your health
information to provide you with the best possible care.”
http://www.ehealth.gov.au/internet/ehealth/publishing.nsf/c
ontent/home
“eHealth Records explained” by Metro North Brisbane
Medicare Local
https://www.youtube.com/watch?v=e9gkl98EphI
What is a Personally Controlled Electronic Health
Record? (PCEHR) [Slated to become myHealth Record]

18. 18
Many aspects of life in society have evolved
from paper to…

19. 19
A life online … connected systems
All Personally Controlled

20. Digital Information & Sharing:
What to share, with whom?
O In hospitals / health settings: voluntary reporting
of incidents into an online system IIMS (for
accreditation)  culture of reporting and
sharing increasing safety; spreading knowledge
across sites.
O In eHealth records (Electronic medical records;
Personally controlled eHealth records)
O In Social Media (e.g., Facebook, Twitter, Skype,
Instagram)

21. How the PCEHR operates
Source: Hunter
Medicare Local

22. 22
Personally Controlled Electronic Health
Record
PCEHR
“it is envisaged that the PCEHR will improve the
interaction between service providers and patients
and will empower patients with their own
healthcare related information to make informed
decisions.”
Muhammad & Wichramasinghe, 2013

23. Substitute
Decision-
Making
Supported
Decision-
Making
Guardianship
Nominated
Representative
s
Authorised
Representative
s
Safeguard
s
Opt - In
Opt - Out
Aspects of PCEHR

24. Personally Controlled Electronic Health Records Act 2012
(Cth): An Act to provide for a system of access to electronic
health records, and for related purposes.
(April 2015) PCEHR is currently ‘opt-in’ – recommended to become
‘opt-out’.
Applying for a PCEHR
as the patient; Part A of Application Form
for a dependent as an Authorised Representative
Once you have a PCEHR, you can request that a ‘Nominated
Representative’ have access to your record (this is done within the
PCEHR system).
People can apply for a PCEHR for a ‘dependent’ (e.g., a person over
18 who does not have legal capacity). (Part B of application form)

25. • Wherever you appear in the health system your history will
be available electronically.
• It’s a summary of your healthcare (not replacement of
local clinical systems)
• Less reliance on your memory and paperwork for
healthcare history.
25
PCEHR key benefits
• Personally Controlled (PC) – designed for the patient to control
their health information.
• System will grow over time with more use & enhanced
functionality as usage grows.

26. 26
For further information on PCEHR
PCEHR:
Australian Government Department of Health – eHealth site:
www.eHealth.gov.au
National e-Health Transition Authority (nehta):
www.nehta.gov.au
Privacy & Security:
Office of the Australian Information Commissioner
www.oaic.gov.au
Stay Smart Online is the Australian Government's online safety and
security website, designed to help everyone understand the risks and
the simple steps we can take to protect our personal and financial
information online.
www.staysmartomline.gov.au

27. O Medicare history
O Medications history
O Adverse reactions
O Allergies
O Procedures / interventions
O Immunisations
O Advance Care (“Living Will”)
Directive Custodian
O Australian Organ Donor Register
O Next of kin
O Access Controls
27
What information is in the PCEHR ?
 Pathology results
 Diagnostic imaging
 Health record overview

28. Shared Health Summary

29. Prescription and Dispense View

30. 30
SMS/ Email Alerts

31. 31
Breach of Privacy
What can I do if I think someone has breached my privacy?
1) Check the audit trail
2) With evidence of a breach contact the System Operator (Medicare
eHealth) by calling 1800 723 471 or visit your local Medicare
Services Centre.
3) Following the receipt of your complaint, the System Operator may
refer your complaint to the Office of the Australian Information
Commissioner or a privacy regulator in a State or Territory.

32. 32
How long are records stored?
PCEHR Lifetime
• The key records that form part of a deactivated eHealth record,
including any Shared Health summaries, will be stored in the
National Repositories Service for a period of at least 30 years
after death
• if a date of death is unknown, for a period of at least 130 years
after the record was uploaded

33. What do you think of PCEHR?
Will it help in transition to adulthood?
Older Children and Young Adults with Cerebral Palsy & Families.
We would like to talk to you about your impressions of the PCEHR.
Interviews with child / observations at home with computer if NSW.
Interviews can also be by Skype.
Contact: Bronwyn.Hemsley@newcastle.edu.au
@bronwynhemsley

34. 34
Privacy
Confidentiality
Personal control? Help to Use?
What information is
stored?
We need to talk ..
(social media)
(PCEHR)
issues arising

35. Clinical Implications
O Parents need to be involved in what
information will assist others to provide
good care
O Children need to be involved in goal-
setting around communicating with health
providers, about health, about
themselves.
O Service providers need to give children
time to respond, and a choice to be
‘background’ or ‘foreground’ in interactions
/ to move between these

36. Clinical Implications
O Clinicians think about being registered
with PCEHR and to assist families and
children in the process of registration,
uploading, and use of the system.
O Clinicians, General Practitioners, need to
advocate use of PCEHR where it might
help to convey and store information over
the lifespan
O Parents need to ask GPs to access the
child’s PCEHR and to use it regularly.

37. Clinical Implications
O Think about goals relating to ‘health
literacy’ and ‘conveying health information’
O Think about the concepts of ‘sharing’ and
deciding, what information to share with
whom, and when?
O Think strategically about how children
with CP can gather information about
health, using online forums.

38. Directions for Future
Research
O Uptake and use of PCEHR and other
online forums including social media
O Health impacts of using Information
Communication Technologies
O Supported decision-making in relation to
eHealth technologies
O Ask young people with CP: What
information is most useful over the
lifespan, for storage and update? Who
should have access, and how does this
help?

39. O Communicative environment of health settings
O Social research on health systems, policies, and
processes of care.
O Patient safety research
O Evaluation of communication interventions
O Costs of care in health settings.
O Experiences of younger children with
communication disabilitiesin health interactions.
O Caregiver mastery, and transfer of care info
O Occupational health and safety issues
O Impact of providing support (for parents / siblings)
Directions for Future
Research

40. WHAT DO YOU
THINK?
GOVERNMENT
DISCUSSION PAPER
IS NOW OUT FOR
COMMENT
THINK OF PEOPLE
WHO CANNOT TELL
THEIR HEALTH
HISTORY
GO TO:
https://consultations.health.go
v.au/ehealth/ehr-and-hi-
legislation-discussion-paper-1
closes 24th June 2015

41. connections
O bronwyn.hemsley@newcastle.edu.au
O @bronwynhemsley
#PCEHResearch #TweetReach #HospitalComms
?

42. Onward Resources

43. Book is In Press
Chapter:
Powrie, B., & Hemsley, B.
Goal setting when
communication is a
challenge

44. Special Issue: Social Media and
Communication Disability (2015)
Special Issue edited by
Bronwyn Hemsley and
Janice Murray
8 papers

45. Older parent carers of adults
with cerebral palsy and complex
communication needs in hospital
Doctoral Research of
Hemsley, B.
Supervision of
Balandin, S, & Togher,
L.
An NHMRC Project Grant 2013-2016 APP1042635

46. Communication in hospital for people
with developmental disabilities
Postdoctoral research of
Hemsley, B.
Advisors and
collaborators: Worrall, L.,
& Balandin, S.
An NHMRC Postdoctoral Research Fellowship 2009-2013
eHealth

47. Keeping people with communication
disability safe in hospital
Hemsley, B
Georgiou, A
Hill, S
Balandin, S.
et al
An NHMRC Project Grant 2013-2016 APP1042635
eHealth

48. #TweetReach: Using Twitter to increase
information exchange for people with
communication disabilities
Hemsley, B,
Balandin, S,
Palmer, S, &
Dann, S.
An ARC Discovery Early Career Research Award 2014-2017
eHealth
eSocial