The latest
news on the plans for the trials comes from Senate Estimates a week or so ago..
Here are the
relevant bits (Skip down a page or so if you have already read it all)
Senator MOORE: What consultation has been had
with the medical profession regarding the decision to shift to the opt-out
system?
Mr Madden: The recommendations from the
review were to increase participation in the system. The health community had
said, 'If we had the majority of our patients in the system, we would be more
compelled and likely to take this on and use it.' That came through in the form
of submissions from the AMA, RACGP, Consumers Health Forum and others—
Senator MOORE: That was prior to 2014.
Mr Madden: That was in 2014, in the report.
We did do some consultation directly with health care providers and the
community between July and September 2014 just to confirm views about how that
would work. The point I need to make is that opt-out, in the current budgetary
decision, is to trial opt-out in at least two geographical locations to
understand the issues and make sure that we have continued to maintain the
consumer's or individual's confidence in the system and to understand the
issues that might come with that. So we have not taken a decision to move
completely to a national—
Senator MOORE: But you have made a decision to
go to the trial of two opt-outs, which is a distinct change from the other
process. This committee did an inquiry into the original legislation and the
opt-in/opt-out model was a great point of contention at that time. So now, as a
result of the review, we have gone with a trialling of opt-out.
Mr Madden: Yes.
Senator MOORE: What form are the trials going to
take; has that been determined?
Mr Madden: We are looking at least at two
trial sites. We are working with states and territories through the Australian
Health Ministers Advisory Committee on the possible selection of sites. We need
to find sites which are discernible so that people who are in the sites in the
trials know that they are in the trials and people who are outside know that
they are clearly not. So we will be doing consultation on the location of the
trials. We will be trialling our communication processes and also working
through education, communication and training for GPs and other health care
providers in the trial sites. While the population and the individuals in those
areas might have a registration, we want to make sure that the health care
providers are engaged with that system as well. That is why it is important to
work with the states, so that we have a connection through the public hospital
system.
Senator McLUCAS: Are you proposing to use a PHN
boundary for those trial sites?
Mr Madden: Not necessarily. The trial
population that we are looking for across, again, a minimum of two and a
maximum of five, would be about a million people. So it would probably be an
amalgam of some PHNs and it could be based on postcodes that join a couple of
PHNs together. We want to get a spread that includes lots of people or
individuals and lots of GPs and specialists, allied and private, and public
hospitals to get the whole connected community of health care providers for
that community involved.
Senator MOORE: Have the terms of the trial been
determined yet?
Mr Madden: No. Where we have got to at the
moment is to describe the criteria that would pick out what those trial areas
might be. We will be looking to appoint an independent person to create the
evaluation criteria for that, certainly well before the trials begin.
And here:
Senator MOORE: I was just talking with you, Mr
Madden, and also with NEHTA about the opt-out trials and in terms of the
process you said you were going to look at two sites. Is that right?
Mr Madden: Yes. We are looking for a minimum
of two sites. We do not want to go any larger than five. Again, we have
criteria that would describe what would make for the best sites or not for the
best sites. Did you want to know about the logistics of the opt-out?
Senator MOORE: Yes, I do, because of the
process.
Mr Madden: By September we are looking to
have the sites selected. In the funding for the opt-out trials or what we have
called the participation trials, we have funding for education, communication
and training for healthcare providers and certainly a heavy dose of
communication for individuals in the areas so they are aware of what this means
to them, what they get as a benefit, what their rights are and what they do if
they choose to opt out. We would be looking to do that from early 2016 with the
training starting around about the same time for the healthcare providers.
We then have a period for two
months where we have a system available for the communities to inquire and get
information about staying in the system or opting out of the system. They will
have a system where they can indicate their expectation or their option to opt
out of the system and after that two months we will create skeleton eHealth
records for all of those people who did not choose to opt out. We will then
give them six weeks or so for them to log into and take control of their
records, if that is what they choose to do, because the eHealth system will
still have the patient or the personally control aspects. They can still
determine who can operate their eHealth record on their behalf, healthcare
providers that might be allowed to or not allowed to upload records to their
record and who can or cannot see particular records. They will have five weeks
to take control of those and to put all of those controls in place if that is
what they choose to do. Then about two weeks after that we will create the
records. We are looking to target that for having records in the hands of
healthcare providers and individuals after the controls have been set some time
during July 2016.
Senator MOORE: So it is just over the year?
----- End extract.
So, in
summary, after site selection we will have:
1. Education
of providers and consumers on what is happening, what their rights will be to
opt-out starting in early 2016 - with some training for providers in early 2016.
2. Two months
will then be spent with consumers being able to try the system and inquire about
and choose to opt-out etc.
3. Then
everyone who did not opt out will have a skeleton record created within the
system - presumably using data from the IHI service.
4. The opted
in consumers will then have five weeks to take control of their record and set
their desired access controls.
5. Two weeks
after that the record will be populated with all the other information like,
presumably PBS and Medicare claims data.
6. Providers
and users will then have access and the system will be available for use a
little over a year from now. Of course there will still be limited numbers of
Shared Health Summaries and other useful clinical documents.
At present we
do not seem to have information on:
1. How long
the trials will actually run? - it would need to be a reasonable while - at
least a year in my view.
2. Just how
the trials will ensure the consumers (and providers) are actually engaged with
all this - we are, remember, talking about a million people - many of whom will
be children, homeless, lacking literacy or internet access, be mentally
impaired or incompetent, be just who just ignore Government messages etc. (is no
response treated as agreement to have a record or not?).
3. What the
evaluation criteria for the Trials will be and how the trial outcomes will
inform what happens next?
4. How will
those who move in or out of a geographic trial area be detected and informed
what is to happen to them and what they need to do?
5. How will
those who reach an age of competence for independent decision making be alerted
that they need to take some decisions and how will children who desire independence
from parental access to their record be managed?
6. How will
children who do not have control of their record and who want to suppress
information (medications, referrals etc. that has been automatically loaded) from
parents and others and who are old enough to know what they are doing, obtain
the control they want of their record?
7. How will it
be determined who controls an opt-out record if the patient is for some reason
not able to take control for themselves?
8. What will
happen if a disengaged consumer has information automatically loaded into the
PCEHR they are concerned about being known to others and this information is
then disclosed via clinician access to the record (or more likely their staff)?
9. How will
control of created PCEHRs be adjusted in the event of divorce, family violence etc?
Feel free to
add further concerns of your own regarding the trials. I am sure there are many
others.
I have to say
to have an unconsented record created and populated for you when you are a demented
90 year old in a nursing home or a fifteen year old who wants nothing to do
with her abusive parents having access to her auto-created record seems pretty
bizarre. Surely we need to have a positive response agreeing to opt in before
record are created? If not the Government is setting itself for a ‘world of
pain’ I reckon. I wonder has this been properly thought through?
David.
