Anthony Hill Health and Disability Commissioner (Friday, 11.45am, Forum Room)

1. Health Information
and
Consumer-Centred Care
Anthony Hill
Health and Disability Commissioner
9 November 2012
HINZ Conference 2012

2. Overview
• Vision
• Consumer-centred care and Health
IT
• Recurring themes
• Case studies
• Learnings

3. HDC Vision
A Consumer
Centred System

4. What is a consumer-centred
system?
It is about Patient Engagement
• A system “… which will encourage better
communication between patient and doctor,
allow for structured negotiation and
mediation, and raise awareness of patients’
Engagement medical, cultural and family needs.”
• “The focus of attention must shift from the
doctor to the patient.”
Judge Cartwright, 1988, page 176

5. Engagement
An engaged consumer is an empowered consumer
• “If health is on the table, then the patient and
family must be at the table, every table, now.”
Leape et al “Transforming healthcare: a safety imperative” (2009)
Engagement • There is increasing evidence that involving patients
in decision making has positive effects in terms of
patient satisfaction, adherence to treatment
regimes and even their health outcomes
Van Steenkiste et al “Improving cardiovascular risk management:
a randomized control trial on the effect of a decision support tool
for patients and physicians” (2007); O’Connor et al “Decision aids
for people facing health treating or screening decisions (2003).

6. Engagement
“Many doctors aspire to excellence in
diagnosing disease. Far fewer,
unfortunately aspire to the same
Engagement standards of excellence in diagnosing what
patients want… preference misdiagnoses
are commonplace. In part, this is because
doctors are rarely made aware that they
have made a preference misdiagnosis. It
is the silent misdiagnosis.
Mulley, A., Trimble, C., Elwyn, G (2012) Patients’ preferences matter. Stop the silent
misdiagnosis. The King’s Fund, (p.1).

7. What is a consumer-
centred system?
It is about Transparency
“Disclosure is a professional
obligation…and is a marker of patient-
centred care. It also reflects the
Transparency
transparency of an organisation, which
is believed to be a key component of
safe organisations.
Etchegaray, E et al “Error disclosure: a new domain for safety
culture assessment” (2012)

8. Transparency
• “Care givers and organisations that share
information about errors with patients may also be
likely to share the information internally.”
Etchegaray, E et al “Error disclosure: a new domain for safety
culture assessment” (2012)
Transparency • Views about patient safety and culture of error
disclosure varies across grades and specialties.
Etchegaray, E et al “Error disclosure: a new domain for safety
culture assessment” (2012)
• Leaders of health care organisations can target
education efforts to highlight the importance of, and
rationale for, disclosure .
Durani et al “Junior doctors and patient safety: evaluating
knowledge, attitudes and perceptions of safety climate” (2012)

9. Transparency
“… a culture that is open, transparent,
supportive and committed to learning; where
doctors, nurses and all healthcare workers
Transparency
treat each other and their patients
competently and with respect, where the
patient’s interest is always paramount; and
where patients and families are fully
engaged in their care.”
Leape et al. 2009

10. What is a consumer-
centered system?
It is about “Pitcrews, not cowboys”
Seamless • Complexities of modern medicine demands that
clinicians are no longer working as “cowboys” –
Service working alone in their specialist filed
• Modern medicine is most effective when it functions
like a system – “diverse people working together to
direct their specialised capabilities toward common
goals for patients. They are coordinated by design.
Seamless They are pit crews.”
Service
Atul Gawande “Cowboys and Pitcrews” (2011)
• It is essential that different units within the same
system communicate well
Anthony Hill “Consumer-centered Care- Seamless Service Needed” 2011

11. Seamless service
“Pitcrews, not cowboys”
“Recently, you might be interested to know, I
met an actual cowboy. He described to me
how cowboys do their job today, herding
thousands of cattle. They have tightly
organized teams, with everyone assigned
Seamless service specific positions and communicating with
each other constantly. They have protocols
and checklists for bad weather, emergencies,
the inoculations they must dispense. Even
the cowboys, it turns out, function like pit
crews now. It may be time for us to join
them.”
Atul Gawande “Cowboys and Pitcrews” (2011)

12. What is a consumer-
centred system?
It is about Culture
“Culture exerts a powerful influence on people’s
Culture disposition to identify behaviours, assumptions
or omissions that can lead to medical errors.”
Clancy “New Research Highlights the Role of Patient Safety and
Safer Care” (2011)

13. Culture
“We envisage a culture centered on
teamwork, grounded in mission and
purpose, in which organisational
Culture
managers and boards hold
themselves accountable for safety
and learning to improve.”
Leape et al 2009

14. HDC Vision
Engagement
Consumer
Seamless
Transparency Centred Service
System
Culture

15. Consumer-Centred Care
• “A patient-centered approach
Seamless fosters interactions in which
Service clinicians and patients engage in
two-way sharing of information;
explore patients’ values and
preferences, help patients and
Engagement their families make clinical
decisions; facilitate access to
appropriate care …”
Transparency
• Patient-centered interactions
strive to achieve a state of
Culture shared information, shared
deliberation, and shared mind”
Epstein et al (2010)

16. Overview
• Vision
• Consumer-centred care and Health
IT
• Recurring themes
• Case studies
• Learnings

17. Consumer-Centred Care
and Health IT – An Enabler
“Health professionals across the
different institutional settings
would find it much easier to
Seamless
Service
provide seamless care if they
shared easy access to a common
patient record”
NZ Ministerial Review Group Report (2009)

18. Consumer-Centred Care
and Health IT – An Enabler
• “Investments in infrastructure … and
information technology (IT) application …are
important in fostering environments that enable
accessible, coordinated, and responsive care. “
Seamless Epstein, et al. (2010)
Service
• Health care should be supported by systems
that are carefully and consciously designed to
produce care that is safe, effective, patient-
centered, timely, efficient, and equitable.
IOM, Crossing the Quality Chasm (2001)

19. Consumer-Centered Care
and Health IT – The Evidence
• Researchers at the Johns Hopkins
University Evidence-Based Practice
Center recently reviewed the evidence
Seamless
Service on the impact of health IT applications
developed and implemented to
enhance the provision of patient-
centered care.
• Particular attention given to the role of
health IT in improving shared decision-
Engagement making, patient–clinician
communication, and access to medical
information by patients.

20. Consumer-Centred Care and
Health IT – The Evidence
“Substantial evidence exists confirming that
health IT applications with patient-centered
care-related components have a positive effect
on health care outcomes.”
Enabling Patient-Centered Care through Health Information
Technology (AHRQ, June 2012)
www.ahrq.gov/clinic/tp/pcchittp.htm)

21. Consumer-Centred Care and
Health IT –
A Cautionary Note
• “Although the use of health information
technology and similar infrastructure supports
are important enablers of patient-centered care,
the concept, at its core, encapsulates healing
relationships grounded in strong
communication and trust”
Epstein, et al. (2010)

22. Overview
• Vision
• Consumer-centred care and Health
IT
• Recurring Themes
• Case Studies
• Learnings

23. Recurring themes
• Have a learning system
• Get the basics right
• Read the notes
• Ask the questions
• Talk with the patient
• Listen to the patient and the
patient’s family
• Ensure continuity of care
• Take responsibility

24. Overview
• Vision
• Consumer-centred care and Health
IT
• Recurring Themes
• Case Studies
• Learnings

25. Case Example 1
10HDC01419
• In 2009 Mr A frequently consulted Dr B regarding his
skin condition, and received referrals to
dermatologists.
• In June 2010, Mr A also consulted a homeopath about
his skin condition, and was asked to have a blood test
prior to the consultation.
• Dr B organised the blood test and then received the
results.
• The test results were normal, except for the protein
electrophoresis test which indicated that further
review and surveillance were necessary.
• Dr B discussed the results with Mr A and they decided
to carry out follow-up tests.

26. Case Example 1 cont…
• Follow-up blood and urine tests were carried out
in August 2010.
• The results were positive on the Bence Jones
Protein test, which is an indicator for multiple
myeloma.
• The test results were noted by Dr B as abnormal,
but he accidentally misfiled the result.
• Dr B did not inform Mr A of the significant result,
and did not refer Mr A for specialist advice.

27. Case Example 1 cont …
What happened?
• Dr B explained that his usual practice with abnormal test
results is to leave them in his “Practitioner's In-box” until
he has determined the appropriate course of action to be
taken.
• In this case however, Dr B inadvertently filed the result in
Mr A's patient inbox. Dr B told HDC that when results are
filed in a patient's inbox, they "are not accentuated unless
the in-box is opened".
• Dr B did not attach a reminder to the result.
As a consequence of these actions, Dr B stated that his
"attention was diverted" and he did not inform Mr A of the
results at that time, or refer him to a specialist.

28. Case Example 1 cont …
How did it happen?
• Dr B considers that a feature of the practice
management system which the medical centre
use contributed to his misfiling.
• Dr B claimed that the short-cut keys for filing a
result are too close together, increasing the
potential for inadvertent filing.
• There is no warning when an abnormal result
is accidentally filed.

29. Case Example 1 cont …
• Dr B wrote to the practice management
system company suggesting a modification of
the keys used to file inbox documents. The
practice management system company did
not adopt his suggestion, and stated that the
preferred method for filing inbox results is to
use the mouse and click on the 'File' button
when a particular lab result is being viewed,
not to use the short-cut keys.

30. Case Example 1 cont …
My Opinion
• Doctors owe patients a duty of care in handling
patient test results.
• Primary responsibility for following up abnormal
results rests with the clinician who ordered the
tests.
• Dr B's failure to inform Mr A of the significantly
abnormal result and to follow up on that
abnormal result in an appropriate manner was a
severe departure from expected practice.

31. Case Example 1 cont …
• Patient test result management systems may
never be completely fail-safe, and do not exist
in isolation from their users.
• Institute of Medicine 2011 report on health
information technology and patient safety,
notes that the challenges facing safer
healthcare and safer use of information
technology involve the people using the
technology, as much as the technology itself.

32. Case Example 1 cont …
• To ensure patient safety, general practitioners
and practices must remain especially vigilant
when managing abnormal test results, and need
to utilise methods available to them that reduce
the possibility of human or technological error.
• In this case, that could have included using a
computer mouse to file results rather than
shortcut keys, and using a reminder system such
as the patient and provider task manager, the
recall module, and patient alerts.

33. Case Example 1 cont …
• While Dr B correctly marked the Bence Jones
Protein test as abnormal, he did not advise Mr A
of the abnormality, or refer him to a specialist.
• Dr B did not utilise the methods available to him
to ensure that he appropriately managed Mr A's
abnormal test result, and this was unacceptable.
• Dr B breached Rights 4(1) and 6(1)(f) of the
Code.

34. Case Example 2
09HDC01883
• Dr E, a respiratory physician at DHB 2, referred
Mr A to DHB 1’s cardiology department for an
angiography.
• Dr E telephoned DHB 1, and faxed a referral
letter. A copy of Mr A’s exercise tolerance test
(ETT) results were attached.
• The referral needed to be assessed at DHB 1
to determine whether it was an urgent, semi-
urgent or routine priority.

35. Case Example 2 cont …
• The objective information contained in Mr A’s
ETT results was significant, and warranted an
urgent priority or immediate admission.
• The referral letter stated that the ETT results
were “positive”.
• However, the triaging cardiologist, Dr D, was
not able to decipher the ETT results that were
faxed as they were too faint to read.

36. Case Example 2 cont …
• Neither DHB 1’s staff nor Dr D followed up a
legible copy of the ETT results.
• Dr D gave Mr A a "semi-urgent" grading based
on the information contained in the referral
letter.
• Mr A was subsequently offered appointment
dates in August 2009 and September 2009.
• Mr A died of a heart attack prior to the first of
those appointments.

37. Case Example 2 cont …
My Opinion
• DHB 1’s procedures failed in three important
areas: staff did not obtain sufficient information
to determine whether it was necessary to refer
Dr E's call to the on-call registrar or consultant,
did not seek a legible copy of the ETT results, and
did not appropriately acknowledge the referral.
• DHB 1 did not provide services with reasonable
care and skill and breached Right 4(1) of the
Code.

38. Case Example 2 cont …
My Opinion
• DHB 1 did not communicate effectively with DHB 2 and
so breached Right 4(5) of the Code.
• DHB 1 failed to provide Mr A with adequate
information about his referral and breached Right
6(1)(c) of the Code.
• Adverse comment was made about Dr D's failure to
ensure that a legible copy of the ETT results were
obtained and reviewed.
• Adverse comment was made about DHB 2's failure to
ensure the referral had been received and was being
actioned.

39. Case Example 2 cont …
What happened?
“In the dry language of systems and processes, of
transmission technologies and referral protocols, we
can miss the very human dynamics that give life to
these systems and processes.
What happened here, despite the complexity of Mr A's
condition, was straightforward. A system, designed to
ensure that patients who require either immediate
hospitalisation or an urgent assessment are assessed in
a timely way, failed to deliver.”

40. Case Example 2 cont …
“In any healthcare system, there are a series of layers
of protections and people, which together operate to
deliver seamless service to a patient. When any one or
more of these layers do not operate optimally, the
potential for that level to provide protection, or deliver
services, is compromised. When a series of such events
occur, although each are often minor in themselves,
the fabric that is wrapped around the patient in the
delivery of a seamless service is torn. When a series of
tears, or holes, line up, poor outcomes result. Patients
are at risk of being harmed.”

41. Case Example 2 cont …
Where the two roads meet: individual responsibility
and organisational responsibility.

42. Case Example 2 cont …
DHB 2 advised HDC that it later sent a direction to all consultant
physicians, which stated:
• The ETT paper is pink and does not fax well. It is better to
photocopy the ETT onto white paper and fax the white copy.
• It was in the process of acquiring a laser printer for the ETT machine
to ensure that the printout of the ETT findings are of the highest
quality. The physicians were advised to ensure they know the
quality of the ETT before it is sent.
• Referral letters to DHB 1 must include the salient investigation
abnormalities. For ETTs this should include exercise time, degree of
abnormality (amount and type of ST shift), time to onset of
abnormality (ST shift or arrhythmias), blood pressure response,
symptoms and recovery abnormalities, if any.

43. Overview
• Vision
• Consumer-centred care and Health
IT
• Recurring Themes
• Case Studies
• Learnings

44. Key Learnings
“Investments in infrastructure … and
information technology (IT) application …are
important in fostering environments that enable
accessible, coordinated, and responsive care. Yet
… the presence of infrastructure and IT alone
are not sufficient to produce healing
relationships and effective communication”
Epstein, et al. (2010)

45. Key Learnings
“Health professionals across the different
institutional settings would find it much easier to
provide seamless care if they shared easy access to
a common patient record … There is real advantage
in starting to develop the ability of community,
primary and secondary clinicians to work together
first, rather than relying on an IT project to ‘push’
these changes.”
NZ Ministerial Review Group Report (2009)

46. Key Learnings
“It is widely believed that health IT, when designed,
implemented, and used appropriately, can be a positive
enabler to transform the way care is delivered. Designed
and implemented inappropriately, health IT can add an
additional layer of complexity to the already complex
delivery of health care, which can lead to unintended
adverse consequences, for example, dosing errors, failing
to detect fatal illnesses, and delaying treatment due to
poor human-computer interactions or loss of data”
IOM (2011) Health IT and Patient Safety:
Building Safer Systems for Better Care

47. Conclusion
• Technology does not exist in isolation from its
user – the design and use of health IT are
interdependent
• Technology by itself doesn’t improve care, but
patient-centred care does require health IT

48. www.hdc.org.nz