Download Shared health information – the way of the future

Shared health information – the
way of the future
November 2012
Summary Document
1. Purpose
In July, August and September 2012, the National Health IT Board (NHITB) held a series of public and
community seminars to discuss improvements to the way personal health information is shared electronically.
The seminars were a follow-on from the NHITB's 2010 Future of Health public workshops, and were held in
New Plymouth, Christchurch, Invercargill, Auckland, Wellington, Nelson and Tauranga. They were an
opportunity to provide updates on progress and gather feedback.
The seminars were attended by 470 people, with around 200 attending the public seminars held in New
Plymouth, Invercargill, Auckland, and Nelson. Community seminars for Asian, Māori and Pacific peoples, and
for older people and students, were also held. As well, a number of District Health Board (DHB) briefings were
held to discuss the impact of the changes on health professionals.
2. Background
The National Health IT Plan was released in September 2010, following extensive consultation with and input
from clinicians, vendors and consumers.
By the end of 2014 the Government's aim is for all New Zealanders and the health professionals caring for them
to have electronic access to a core set of personal health information.
Connected Health branding
Connected Health was introduced at the seminars as an existing brand of the NHITB, currently used in relation
to the exchange of secure information via telecommunications.
Connected Health is being expanded as a brand that can be used as an umbrella term for the IT systems and
environments that securely share information. The brand will have a public focus, and cover the wider sharing
of personal health information. Systems and portals displaying the Connected Health symbol will help reassure
consumers that the information collected and accessed is high quality, secure and trustworthy.
Security of information
Security of personal health information is protected by rules and legislation, particularly the Privacy Act 1993,
Health Information Privacy Code 1994 and Section 22 of the Health Act 1956. Health providers such as DHBs
also have their own privacy and security policies, and information standards provide further security measures.
 Under the Privacy Act 1993, a person has certain rights regarding their personal information, including the
right to correct it, see who has looked at the information, and to know what it is used for. Clinicians and
health organisations have the important role of custodianship of that information.
Information Governance Framework
An expert advisory group has been established to develop a Health Information Governance Framework. The
framework will support the Ministry, DHBs and service providers to securely manage health information at
local, regional and national levels and it aims to appropriately balance clinical safety, consumer confidence and
trust, and administrative efficiency. Issues being considered by the expert advisory group include who should
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have access to the Connected Health environment and whether (and how) access to some information is
accessible to some people involved in a person’s care but not to others.
Consumer and clinician input
The NHITB’s Consumer Panel and National Information Clinical Leadership Group (NICLG) work closely with
the NHITB to ensure consumer and clinician views are taken into consideration. During the seminars,
representatives from the Consumer Panel and the Clinical Leadership Group shared their experiences.
The Consumer Panel
It is vital consumers are involved right from the start in the development of IT solutions that will impact on how
their personal health information will be shared. The Consumer Panel, convened in late 2010, advises the
NHITB on consumer-centred issues, especially the measures that will be needed to give people the confidence to
allow their health information to be shared electronically. As we approach 2014, the challenge for the Consumer
Panel is to make sure each link in the chain of measures required to justify consumer trust is in place and robust.
Clinical leadership
NICLG, which was established in September 2009, provides clinical leadership and input into projects and
programmes that aim to achieve the eHealth vision. NICLG members represent a variety of professional bodies
and colleges that provide leadership and support for clinicians in New Zealand.
Benefits of sharing health information
The benefits of sharing health information were discussed at the seminars. Every person with an NHI number: :
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will be able to log on to a computer and see their core health information
will be able to view a set of alerts and allergies relevant to their health
won’t always have to repeat their medical history when they see someone new, or have tests repeated.
Better, safer care will be provided, because health professionals will have a fuller picture of a person’s medical
history and the care they are receiving.
Ernie Newman, Chair of the Consumer Panel, said Connected Health records offered huge benefits to
consumers. There are challenging issues around privacy to be worked through, but they are well-understood,
taken seriously, and being designed into the plans. He said privacy is a non-negotiable essential from a
consumer perspective. The NHITB has a strong sense of accountability to consumers and is engaging with them.
The Consumer Panel, and these seminars, are part of that engagement.
3. Seminar outcomes and themes
Overall, seminar attendees were supportive of information sharing, while raising questions about access to
information, information governance, and information security.
These seminars provided an insight into the views of communities from the perspective of attendees, but do not
necessarily represent the views of whole communities, or population groups. There will be more opportunities
for people within communities to share their thoughts and provide feedback.
Attendees felt a number of pre-requisites needed to be in place for them to be comfortable with the increased
sharing of their personal health information. Common themes included:
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personal information that is held and shared with others needs to be trusted, reliable and accurate
there must be the ability to keep sensitive information ‘off the record’ or in a restricted ‘sealed envelope’
people need to be able to make comments on their electronic record, and there must be clear processes
for people to request a correction to their information
it should be possible to access your own health information wherever you are in New Zealand or
overseas
considerable awareness and education is required in the future to ensure the public is aware of what the
changes around the sharing of personal health information mean for them.
Addressing these questions and concerns is a priority for the sector in the next two years.
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General public forums
The key focus areas for the general public forums were governance and access to personal health information,
ensuring equality of access, principles for handling sensitive information and ensuring privacy of information.
Who has access to my personal health information?
There were several questions about who governs a person’s health information. There was agreement that
people need to be able to choose and have a level of control over who accesses their information and what
information they can view. There was a strong sense that people need to have the ability to set their own
privacy settings.
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In certain circumstances a person may need to access a family member’s information, for example, in
the case of children or an elderly relative. Finding out how you can nominate people to access your
information must be clear to the public.
Access to personal health information by non-health professionals such as auditors, IT staff, and coders
was raised as a concern. There was concern that, in the event health information is shared outside of
health, ie, insurance companies or ACC, the person or their nominated representative needs to approve
the wider sharing of their health information before this happens.
Generally there was support for an ‘opt-off’ system, provided the process is clear and people can make
this choice. People need to be given enough information to understand how opt-off works.
There was discussion on whether a person’s full health record should be transferred, when they transfer
to a new GP or other health professional.
There was support for treatment providers being able to access their patient’s personal health data while
they were overseas (with patient consent), and for patients to have the same access when overseas.
A recurring theme was concern that other parties, such as insurance companies and government
departments, would gain access to an person’s information and use it for another purpose, without
consent. A robust and transparent information governance process needs to be implemented to avoid
this.
There was discussion about the need for people to have access to family members’ health records
following death, for the benefit of future generations. There was comment that people should be able to
choose what information to pass on and there needs to be information readily available to guide people
through this decision-making process.
Christine Britain from Consumer Panel leads a breakout session in Ellerslie, Auckland
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Equality of access
Although there was support for an increase in sharing of personal health information, there was recognition that
equality of access for all New Zealanders is paramount.
It was suggested there needs to be a focus on ensuring everybody, no matter where they are in the country or
overseas, is able to have electronic access to their core health information. This is irrespective of whether they
have a computer, a desire to use a computer, or internet access. Although New Zealanders are seen as early
adopters of technology there are still many who do not have easy access to computers and other electronic
devices that support online interaction with health information.
Other points were:
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the importance of providing support for consumers wanting to discuss their information and health
needs by telephone
the need to ensure alternative access options such as having information read over the phone for blind
people, providing public library access to computers, smart phones and other mobile
telecommunications devices.
Sensitive information
The topic of sensitive information was discussed in some depth at the seminars. There was consistent support
for people to have the ability to place information in a ‘sealed area’. However, it was recognised there is a need
to balance clinical risk - for example, where the clinician is missing information when deciding treatment - with
patient requests for their information to be confidential.
People define sensitive information differently. Information relating to mental health, sexual health, and alcohol
and drug addictions was considered particularly sensitive. Attendees said clinicians need to see a flag that there
is more information hidden, and perhaps contact details for someone who can provide that information.
Likewise, the clinician needs the ability to keep information confidential from the patient, in certain limited
circumstances.
Generally, the hidden information should only be able to be accessed with the consent of the patient. However,
there needs to be a robust over-rider to ‘break the glass’ and access the information – for example, in emergency
situations if a patient is unconscious.
It was recognised there are people who avoid presenting at hospital or GPs for a wide range of reasons. Others
do not want their information to be known or shared, for example, for immigration reasons, or people needing
protection from violent partners. This is an area not fully understood and it is crucial these concerns are
addressed.
Dr Andrew Bowers leads breakout session at Invercargill public seminar
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Privacy
Those present at the seminars generally felt an audit trail – where you could see who had accessed your
information and when – provided an acceptable degree of protection to support concerns regarding privacy.
They felt reassured privacy issues have been recognised and that these issues will be considered carefully. There
was recognition that electronic information sharing means more people would access a person’s personal health
record, and this makes it critical to have appropriate protections in place.
There are varying degrees of sensitivity and comfort around privacy and confidentiality of information across
the specific population groups that attended the seminars. For example, Māori appear to be more comfortable
than some other population groups with the concept of sharing each other’s health care information within their
whānau.
Health literacy
“Everyone in the group has been online to research a medication”
Seminar attendees felt health literacy was very important. Information needs to be presented in ways that are
easy to read and understand, and aspects of health literacy need to be addressed such as comprehension, and
the reading age required to support and understand the information is important. Information needs to be
understood by those for whom English is not their first language. Health literacy will need to be further
explored.
The public needs to know which health websites are reliable, and recommended, and understand that not all
sites provide correct information. Health professionals have a role to guide patients to reliable online sources of
health information.
Research
Throughout the seminars there was support for personal health information continuing to be used for research
purposes, as long as the information was anonymised, and, in the case of identifiable information, permission
sought from ethics committees. Unanswered questions remain over the protection of people whose information
is included in research. There needs to be a clear definition of what is ‘identifiable information’.
Patient portals
There was an expectation that the security around logon and access to a patient portal would be of a very high
standard, and offer at least the same level of protection as online banking.
Information available to people accessing their own personal health information online needs to be password
protected. ‘Sealed information’ needs to be further protected with a PIN or similar.
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Community seminars
The community seminars helped the NHITB understand the varying family dynamics and roles and
responsibilities of family members when managing the health of others in the family.
Graeme Osborne Director NHITB leads a breakout seesion at Hui in Tauranga
Māori communities
One of the discussion topics at the hui in Tauranga was the needs and views of those in more isolated
communities. Attendees felt that, in rural and isolated areas, there is limited access to internet services, and the
cost to access the internet is prohibitive for some people.
“Flash phones – kids know how to use them? Do we need computers?”
Many of the younger generation have mobile phones and smart phones and it was felt phones could be a more
effective means for younger people to access their information, than computers. Having secure access to their
own online health information in councils, libraries, and/or hospitals was seen as a possible solution to improve
community access to Connected Health records.
“Self-management – Māori need to walk through it, don’t assume people will get it.”
There shouldn’t be an assumption that people will self-manage their health without guidance and education.
For example, for medication management education is required – ‘education equals compliance’.
“Whānau ora is key. IT needs to support this.”
Connected Health will support whānau ora as information sharing empowers whānau to have a greater input
into their own health care, and enables different service providers to work together, with whānau as the focus.
The role of whānau ora providers in caring for communities was seen as very important. In many instances, it is
whānau ora providers or social workers who create the information that will be shared, and in some areas
whānau ora is the central care provider. Consumers need to be empowered to permit access by whānau ora and
patients need to say ‘yes’ or ‘no’ to social worker and whānau ora access.
“Only my family to know this information”.
Attendees said Māori were comfortable with the concept of sharing health care information within their whānau.
It was accepted people needed to be able to give authority to someone else when required.
Attendees said the clinical view and the Māori view might be quite different, and there was a need to be mindful
that there were big regional/tribal differences in practice.
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Geoff Cardwell from Consumer Panel supports discussion at older persons seminar in Christchurch
Older people
For older people and those caring for them, several themes emerged.
It is important to have an enduring power of attorney, and to arrange this early while you are healthy. Some
seminar attendees were concerned their wishes might be overridden by family members if they become unwell.
There was comment that there needs to be greater public awareness of partial and enduring power of attorney.
“Should next of kin gain access to selected information if no power of attorney exists?”
It was suggested family members should only have access to core information about a person, such as diagnosis
and medications, when assisting with that person’s care. ‘Do not resuscitate’ orders should be available for
clinicians or consumers who have access to their health information record.
There was recognition that many older people are IT aware and use computers, the internet and mobile phones.
However, consideration needs to be given to those without internet or access to home computers, mobile phones
or smart phones. There is a need to provide them with access to computers within their community, and to
consider giving authorisation to specific persons to access information on their behalf (refer to equality of
access).
Some older people may be anxious about the information they view online, because of concerns about security.
They may be anxious if they do not fully understand what they are reading, or this is not explained to them.
Graeme Osborne Director NHITB presents at Fo Guang Shan Temple –
Asian Communities seminar in Auckland
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Asian Communities
Those attending the seminar for Asian populations supported the move to the proposed electronic sharing of
personal health information.
There was comment that the family GP was often the ‘gatekeeper’ of information, ensuring other providers only
had access to relevant information. Family members may also visit Chinese clinicians for services such as
acupuncture, and receive treatments including herbal medicines. There was discussion about how these
treatments and providers would be incorporated into health records and care teams, and how access would be
managed.
Concern was raised over the safety and security of information held on a home computer. Where social or
family situations change, there needs to be opportunity to easily remove or change access rights to personal
health information. Additionally, there was concern about insurance and pharmaceutical companies accessing
personal information, and other government agencies gaining access to personal health information over time.
Pacifica
Those attending the meeting with a focus on Pacific populations supported the sharing of health information.
Privacy was very important, and family issues critical. Attendees said Pacific people at around 40 to 50 years of
age may look to delegate their health care management to their children.
There was considerable trust for the family GP, but it was agreed pharmacists should also have access to health
information, as they play an important role in explaining medications. Giving dentists access to a person’s
broader medical history was also important, and a person’s dental information should also be shared as there
can be links to other medical conditions.
Attendees said Pacific communities were particularly concerned about the information sharing with other
government agencies – such as immigration – gaining access to their personal health information.
4. In conclusion
The NHITB has appreciated the opportunity to hear what people think about the benefits and challenges of
sharing health information electronically. The level of engagement with the issues has been pleasing. People
have been keen to discuss what is planned and have raised some thought-provoking matters which we will need
to consider. Good progress has been made since the Future of Health seminars in 2010, and the learnings from
the 2012 Sharing of Health Information seminars are invaluable.
The NHITB and our Consumer Panel and Clinical Leadership Group will work together and with other agencies
and communities across New Zealand to facilitate the effective and secure sharing of health information.
There will be further opportunity for feedback as we continue our work toward 2014. More information on our
progress will be available on the www.ithealthboard.health.nz and www.health.govt.nz/sharedhealthinfo
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Graeme Osborne, Director NHITB presents at Taranaki Base Hospital
Ernie Newman Chair Consumer Panel presents at Bar Italia Café, North Shore Hospital
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