The Future of Health
Enabled by Information
Summary Document
‘Shared care records will make it easier for patients and carers to manage
their own health – and give valuable time back to clinicians’
– Consultant Paediatrician
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Purpose
The National Health IT Board, in association with the Telecommunications Users
Association of NZ, ran a series of seven community workshops across the country
through July and August 2010. Our aim was to examine the issues associated with
shared health care records from the perspective of consumers. We wanted to make
sure that consumers are fully informed and confident about how their health
information is collected, stored and accessed throughout the health and disability
sector, and that we were fully aware of all the issues so that these could be factored
into the planning at an early stage. These workshops were part of ongoing
engagement with consumers to make that happen.
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Background
The National Health IT Board vision for all New Zealanders is: ‘to provide high quality
health care and improve patient safety by achieving a core set of personal health
information that is available electronically to you and your treatment providers
regardless of setting as you access health services, by 2014.’
Health information is deeply personal. Understanding what it comprises, and how to
manage your own health care supported by clinicians, is important in making this
vision a reality. A number of steps must be taken to make sure that health
information is held securely. Already the National Health IT Board is working with
clinicians, suppliers and IT departments that run health networks and systems to
understand how this can be achieved.
Working with the community is an important part of the process. Shared Care
Records are about you, the consumer of health services. Your health, your family’s
health and the health of the community are at the heart of our new approach in
organising the way information is held and accessed in New Zealand. The
workshops highlight our commitment to you and your community to getting this right.
The Future of Health Workshops were the start of a serious national debate on
personal health information across New Zealand. Around 250 people, with links to a
wide range of consumer-centric organisations, took part. We intend to continue a
dialogue to make sure that New Zealanders get a system that meets or exceeds the
expectations of all parties in the health service chain, especially consumers.
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Workshop Outcomes
Consumers want Shared Care Records Sooner rather Than Later
Whilst we could not predict before the workshops what regional themes there would
be, it became clear as we moved around the country that the same points concerned
everyone.
The acceptance of the concept of shared health records was overwhelmingly
positive. The key agreements from the people who attended from the community
were:
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‘We’re surprised how little sharing of information goes on,’
‘We need shared care records and ideally sooner rather than later;’
‘We need to be fully informed and confident about how our personal health
information is collected, stored and accessed,’
‘It’s our information, we need to feel we are in control of it – consumer
leadership is needed alongside clinical leadership,’
‘The move is excellent but before 2014 there needs to far wider public
knowledge that it’s happening.’
There was also widespread support for the ‘break glass’ concept, where in a life or
death situation a clinician could gain access to a complete Shared Health Record
and justify the decision later.
From the wide ranging discussions a number of common themes emerged that
people felt needed to be discussed and explored, both in the community and in the
health sector.
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Key Themes
a)
Special sensitivity
Much of the discussion was on health areas of special sensitivity. Typically these
include mental health and sexual health, but sometimes there may be others such as
domestic violence. There may also be new areas of sensitivity coming through and
therefore personal health records may need to be future proofed to accommodate
this. For example a person with Alzheimer’s may require full health care one week
but be fully cognisant another week requiring no care at all – when and how will
‘permission’ work for this person.
Personal health information related to areas of special sensitivity need to be
explored and discussed fully. Some of the key unanswered questions are:
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Who should define ‘special sensitivity’ areas? Mental and sexual health are
obvious candidates, but are there others? Should the scope be the same for
everyone, or should each individual be entitled to nominate any specific
condition or consultation as sensitive and deserving special privacy?
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If a consultation has been agreed as ‘sensitive’ or off the record, should there
nonetheless be a note on the Shared Care Record indicating simply that there
has been an off-the-record consultation, or should the record be silent?
Should certain sensitive records be deleted after a particular time period – for
example, a termination, or a pregnancy where a child has been given for
adoption?
Should GPs be entitled to opt out of the Shared Care Records system if, for
example, they identify a community desire for off-the-record consultations on
a larger scale?
b)
Permission
Who should give permission to access health care records and when should this
happen? Permission was a key issue transcending all the hot topics. At the
workshops this issue was discussed in detail and key questions were debated at
length.
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When as parents should we stop having permission to access our children’s
health care records? Should there be a standard legal age? What are the
implications of setting this too low, or too high?
What should the boundaries be for young people with disabilities – for
example if you have a child with Down’s syndrome who is now an adult living
in sheltered accommodation should you as a parent still have access to their
personal health information? Should the caregiver have such access?
If older people become incapable of looking after their own health, should
their children or caregivers gain access to their records? Should the decision
be age based or is there another alternative? Should any purging of data take
place first?
Where there are family or caregivers who act as interpreters for a parent
when they need to see a clinician, should these people have access to the
records? All of the Record , or just the parts relevant to the consultation?
When should partners, parents, and families have or give permission to
access health care records?
What about access by external parties – insurers, ACC, CYFS, and others? It
is easy to say now that they won’t be given access, but external agencies can
be persistent and such protections can erode over time. Is it desirable to give
the records some specific, robust and enduring legal protection?
Clearly the system for storing and recording personal health information must, and
will be robust and flexible. It will be able to cope with one or two parameter
variations. However, for the system to deliver to the greatest effectiveness, such
variations must be kept to a minimum. Thus it is really important that the provisions
made to deal with areas of special sensitivity is thought through with great care, and
that the widest possible consensus is achieved, so that the system can function
effectively.
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c)
Audit
Health records are innately personal. It will be critical for public confidence in the
system that people know as a matter of right, exactly who has accessed their Shared
Care Record, when, and for what purpose. They also need to have confidence that
any unauthorised accessing of records will have a penalty that is a serious deterrent.
Access must be auditable in every sense including:
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the date and time when the health care record was accessed
what information was accessed, eg, basic information
who has access to the health care record, eg, clinician; nurse or researcher?
what action an individual can take if they feel their record has been accessed
unlawfully.
Some attendees suggested that consumers should also be entitled to expect that if
there is a breach of confidentiality of their Shared Health Record they will be
informed as of right about the circumstances, what information was accessed by
who, and what disciplinary action has followed.
People who access the health care records will need to know that there is a policy on
this access. The rules around access, and the penalties for unauthorised access,
need to be incorporated in the training regime before anyone in the sector is given a
clinician log-in right. Penalties must be spelt out clearly and must be sufficient to be a
real deterrent – for example, a health worker who accessed data about a celebrity
and sold it to a magazine needs to face a penalty significantly greater than just losing
their job.
However an audit trail as above is only one part of the audit process. A further step
is to make sure the system is robust, allowing for clarity of information input, and that
this data is monitored to check whether the correct information has been added.
Incorrect data entry can have a more serious outcome in the health sector than in
most, so inputting of data should be made simple and clear using consistent
terminology and parameters. This consistency is already taking place, increasingly,
throughout the health sector.
Crucially, there must be understanding about the very high level of trust that access
to health care records confers. Most clinicians who access an individual’s personal
health record do so enhance the health of that person. Other legitimate reasons for
access can for example include medical researchers who require information from
patients’ records, or a practice nurse who needs to check a repeat prescription.
These individuals will need to work with strict ethical and privacy codes, and be fully
trained in these issues and patient confidentiality.
Finally, it was suggested in one Workshop that the sensitivity of Shared Heath
Records was so important that they might benefit from explicit legal protection.
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d)
Opinion versus results
The scope of the information to be included in the Records was the subject of debate
at all venues. There was no dispute that the records should include hard facts – for
example laboratory results, results of examinations, and medication details.
However, there was resistance to the inclusion of opinions or speculation as it was
felt this might compromise the approach taken by other clinicians downstream.
Participants agreed there is a need to flesh out the boundaries in this area and that
consumers and clinicians together need to be consulted on this.
e)
Privacy
Privacy was explored in great depth and is covered in part by the themes above
such as special sensitivity areas. It was acknowledged that privacy was critical, yet
needs to be balanced against the potential to save lives.
No matter how robust the Records and the surrounding processes are, there will
always be some individuals who are uncomfortable and want to opt out. Thought
needs to be given to whether an individual can opt in or out, partially or fully, and
what the implications of this are.
Once the issues have been resolved further, the outcomes can be tested with key
stakeholders including the Privacy Commission with whom the National Health IT
Board is working and who has contributed to the National Health IT Plan.
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Conclusion
There is still much work to be done. Yet shared health care records are already
happening on a limited scale. For example, the three Auckland DHBs are using a
product called TestSafe which keeps test results in a secure online database that
can be accessed by health care providers involved in a patient’s care, unless the
patient makes a request to prevent the sharing of this information. Benefits already
showing through include timely decision-making through access to up to date results,
and reduction in time taken to receive diagnosis as patients may not have to provide
extra test samples for different health care providers. The fact that this initiative has
gone smoothly should give us all heart that the nation-wide introduction of Shared
Health Records is highly achievable.
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What Next?
Currently we are in Phase One which is focused on identifying the key issues early.
This is critical to achieving the vision of core Shared Health Records by 2014.
The National Health IT Board will continue its engagement with consumers. This will
be achieved through ongoing contact with the people who gave their time to attend
the Workshops, consumer groups working in the health field, ethnic groups who may
have specific cultural and other expectations, and the wider public. Our aim will be to
make sure that all major issues are identified and dealt with early in the process, that
the public become increasingly aware that the project is making progress, and that
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by the time of introduction in 2014 the stage is set for trouble-free introduction and
widespread public approval.
We want you to be confident that your personal health information will only be
accessed at the right time for the right reason by the right person.
In 2011 we plan to continue a programme of community consultation. We hope that
you will be a part of our continuing journey to or vision of core Shared Health
Records.
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