SA prepares to go live with PCEHR in Aboriginal communities
The Pangula Mannamurna Health Service in Mt Gambier last week went live with the national eHealth record system, allowing healthcare practitioners to upload shared health summaries to their clients' PCEHRs.
Pangula is one of 10 Aboriginal community controlled health services and two Aboriginal community controlled substance misuse services in SA and is a member of the Aboriginal Health Council of South Australia (AHCSA), which is co-ordinating the roll out of the PCEHR to the clinics serving Aboriginal people in the state.
AHCSA's eHealth program manager, Sarah Ahmed, said nearly all of AHCSA's member health services and the 30-odd clinics they run have applied to take part in the PCEHR, with six of the health services completing full registration so far. All of the health services use Communicare's clinical information system, which is now PCEHR-compliant.
However, while Dr Ahmed said the idea of the PCEHR was an attractive one to many Aboriginal people and the health services that care for them, the process of actually applying to take part in the system has been fraught with difficulty, and it's not just the usual challenge of remoteness that has caused most of these problems.
“I would have to say remoteness is the least important difficulty,” Dr Ahmed said, stressing that her viewpoint is that of AHCSA, not the individual clinics. “The largest obstacle has been confusion about processes because of all the different bodies that need to be involved.
“The HI Service, the PCEHR branch, the PKI eHealth business branch in [the Department of Human Services] – they don't really understand that little health services do not have people dedicated to doing this, and the amount of phone calls, cross communication, paperwork and follow up that needs to be done from the health service end is phenomenal. The apparent lack of coordination between different departments compounds confusion at the health service end.
“The people doing the PCEHR stuff are also doing the clinical work in a health service. So, given a choice between a sick and screaming child or being on the phone to Medicare's eHealth division…”
Dr Ahmed said the recent introduction of assisted registration for the PCEHR was the “best thing since sliced bread”, but that it had taken a lot of time and effort to co-ordinate the multitude of application forms for the different health services, many of which operate in difficult circumstances.
Of the 12 health and substance misuse services in SA, only two are located in Adelaide. The remaining services are spread across rural and remote SA from Mt Gambier in the south east, to Ceduna, Yalata and Oak Valley in the west, rural centres in Port Lincoln, Port Augusta and Whyalla, Coober Pedy in the north and up to the very remote areas across the Anangu Pitjantjatjara Yankunytjatjara (APY) Lands in central Australia, which overlap SA, Western Australia and the Northern Territory.
AHCSA first became involved in eHealth records as a member of the NT Department of Health-led Wave 2 project implementing the foundations for the PCEHR – joining its sister affiliate Aboriginal Medical Services Association Northern Territory (AMSANT) and also including the Northern Territory Medicare Local (NTML) and Western Australian Country Health Service (WACHS) – which concentrated on widening the coverage of the NT's My eHealth Record (MeHR).
AHCSA joined the NT consortium in February 2011 and received federal funding from July 2011 as part of a 12-month project to expand the footprint of the MeHR, concentrating particularly on Aboriginal people but also including non-Aboriginal people living in remote areas who sometimes attend Aboriginal-controlled health service clinics.
Most of the Wave 2 work involved community engagement for AHCSA, and by the end of the project period, over 3000 people had been registered for the MeHR by the community liaison officers who were deployed through its members to talk to individuals and to the healthcare workers at the clinics, Dr Ahmed said.
“Most people hadn't heard of a shared electronic health record and didn't know what they were,” she said. “We were able to upgrade a lot of their IT and made sure they were on the latest version of Communicare. We did all of the registration for the health services for the My eHealth Record with the NT Department of Health, and we did training and had a registration team go out into communities and register individuals.
“We thought it would make more sense to have local people doing the registration work so we developed that, and AHCSA being community-controlled, we funded our services to employ and train their own local staff for community registration.
“By June 2012, when that original 12-month period ended, we had over 3300 people across South Australia registered, which is a lot, bearing in mind we were only able to start registering people from January 2012 when approved registration documentation became available.”
Dr Ahmed said that as the project came to a close and the PCEHR commenced its rollout, it became obvious to AHCSA that the PCEHR was a better option for SA services than continuing the expansion of the MeHR.
“By July 2012, we had a decision to make because whilst the NT was on a longer transition journey from MeHR to PCEHR, estimating PCEHR adoption from late 2013, it really was quite clear that the benefits for us in SA would be with early adoption of a national system and the PCEHR,” she said.
“Since then we've been doing a reengagement and re-education with the health service managers and clinical staff and it was a pretty easy decision for most of them to go national. Most SA Aboriginal community controlled health services were new to the MeHR and at this stage most have decided to go to the PCEHR.”
Dr Ahmed said the 3300 MeHRs set up for South Australians did not contain a great deal of significant information at that stage so it was fairly simple to redirect interest to the PCEHR. And with the health services already registered for their Healthcare Provider Identifier – Organisation (HPI-O) numbers, it was hoped that transitioning to the PCEHR would be reasonably straightforward. It didn't actually turn out that way, however.
“We spent the next six months – July to December 2012 – figuring out how to apply for the PCEHR,” Dr Ahmed said. “We developed a few materials and PCEHR application packs and all of that, and we've really done a lot of hand-holding to help people step through the application process.
“To date, all but two of our member health services and clinics have applied for a PCEHR and we have six confirmed applications and another four are in the process. We have five or six NASH certificates now and the rest are en route – hopefully – and we are negotiating with Communicare to get all of the right versions of the software and get all of the background configuration done.”
January and February this year were extremely difficult months, she said, as a huge amount of time had to be spent on ensuring all of the paperwork was completed correctly, sent off and received. Dr Ahmed is certainly not afraid to criticise what she sees as an overly complex practice registration system that did not take into account remoteness or lack of resources, or even lack of a regular postal service.
“Some places only have a plane leaving once a week, and then it has to get to Kalgoorlie and then a couple of days to post off to wherever. There was an expectation during the whole ePIP thing that things would just be posted off, but it's not that simple. There is a real lack of communication back to services from DHS and DoHA, and when sending things off we try to call to follow things up, but no one will tell you what has been happening.
“That has been a major issue. What we started doing, way before the contracted service provider form was issued, was a lot of [clinics] gave me the authority to follow up their information because I'm in Adelaide and I can do that. It has been a major headache. January and February, those two complete months, all we did was applications for NASH certificates.”
Dr Ahmed is particularly critical of what she says was a great deal of unnecessary confusion.
“A key certificate went through a name change from eHealth PKI to NASH so people were calling it all sorts of different things. When it came to actually installing it, the vendors told us one thing and the NASH certificate people told us another.
“Every time we asked for more information we were directed to a website where there really wasn’t much information available. User guides were produced after the period when we really needed them, so we were left to find out things by trial and error and testing certificates on our own laptops.
“We would plan activities based on delivery dates from the software vendors, and then would hear through the grapevine that new requirements had been added and dates shifted so software with certain functionality would no longer be available as per originally advised dates. Without software we couldn’t begin registration, yet without beginning registration we would lose the hard-earned trust and momentum with clinicians and clients.
“We have a very good relationship with Communicare, who are a very supportive software vendor; I can’t imagine how we could have got to this point if we hadn’t had the relationship we do have with them.”
AHCSA took the step of appointing an eHealth strategic solutions architect, Dan Kyr, to help work through the technical difficulties, which Dr Ahmed said has made a big difference to the team.
“He has had the time and know-how to go in and sort out the certificates and test them and see what works and what doesn't and all of that kind of stuff, so that both we and our vendor have information that we can disseminate to our services with some degree of confidence.
“Services really have relied on us to do this – the Medicare Locals have been very good but being new on the block, they have don't have a lot of information themselves. Some Medicare Locals have been more supportive than others – Country South SA Medicare Local (CSSAML), who supported Pangula, deserve special mention for being so proactive in developing working beneficial partnerships with health services.”
AHCSA itself tried out a lot of the new processes, as it has its own HPI-O and is registered for the PCEHR, she said. “I am the test patient so my name pops up on screen, and Dan tests all of the IT in its various combinations, so that's how we do it.”
Again, however, Dr Ahmed believes the initial process for helping individuals to register for a PCEHR was too onerous. “We actively pushed for assisted registration and many phone calls and hours later, it was finally approved, and our sites have been very quick to pick that up.
“We spend a lot of energy supporting those staff with things like the NASH certificate and the ART tool. At the moment it's all of the policies and procedures around using the ART and training them, but they have been utilising the tool for about a month now and they are sending quite a few registrations to the PCEHR using the ART from South Australia.”
The least of the problems was explaining the PCEHR to people in the community, despite various bureaucracies' efforts to make the job difficult, she said.
“The MeHR had a one-sheet A4 information brochure but to be honest we didn't get very far with that, because no one wanted to read it,” she said. “We had Aboriginal people contacting Aboriginal people for registration and they'd go out and sit down and start talking about how there is this thing called a My eHealth Record, and it means that you don't have to keep repeating your information and remembering details about your health when you travel, and at that point most people would stop them and ask to where to sign.
“Aboriginal people absolutely get the benefit of eHealth. It is so obvious. They all travel, they all have family and they have multiple health issues and they struggle to remember and keep track of them. The only point that people were concerned about was the consent issue – how much of this is in my control – and it was clearly outlined for them that it is completely voluntary and completely free, you give consent, you can ask for information to be deleted or hidden on your record.
“We are finding the same thing with the PCEHR. With the PCEHR we are disseminating information about the personal control of it, that you can go online and change things on your record. A lot of the younger people, particularly in metro regions across SA, are doing online registration and they don't seem to be particularly fussed about the personal access side of it.”
The only major concern seems to be the secondary use of data clause in the PCEHR Act, which has caused some consternation amongst Aboriginal groups in other parts of the country. Dr Ahmed said the main people concerned were health service managers and some community elders.
“When we speak to community members or clinic staff, we inform them that there is a clause in there that says the information is for clinical use but there might be research done using it. Most people aren't worried but there are one or two who have declined for that reason; so far they are mostly in metro Adelaide. The health practitioners are quite worried about it, but the main level of concern is in senior management.
“There are services which have decided to delay their actual use of the PCEHR until the secondary use of data issue is clarified further. That's a very logical step to take to be honest, and is their way of managing their client information. Our way of dealing with this issue at AHCSA is to support our services and enable them to make the right decisions for themselves.”
The real value of the PCEHR for Aboriginal people in remote areas will come when not just clinics and general practices are PCEHR-capable, but hospitals as well, particularly for uploading discharge summaries. Dr Ahmed said South Australia Health is fairly well advanced in developing electronic discharge summary functionality, which will tie in with the state's new EPAS system and be gradually rolled out over the next year or so.
(In the Northern Territory, it is expected that remote health and hospital-based clinicians will be able to view a patient's PCEHR through the remote health PCIS software and the hospitals' CareSys software by January 2014.)
While AHCSA digests the lessons of the go-live at Mt Gambier, it is continuing with its registration campaign, hoping to target the different communities that the health services cover.
“Mt Gambier, for instance, has an Aboriginal client population of around 1200, but that town has four outreach clinics at Naracoorte and Millicent and other places in the south eastern area, so there is potentially another 500 or 600 people,” she said.
“The largest health services who are AHCSA members have over 2000 regular clients each. We have key sites [which] are a cross-roads between SA and other parts of Australia and we are expecting two or three thousand Aboriginal people at least will be targeted, not just the local population but all of the travellers who come through.
“On the other end of the spectrum one health service is in the Great Victoria Desert region – very remote – and their population is approximately 300.
“Assisted registration is probably the easiest way to go, and that is what we are doing. We are targeting the 3000+ we already have with the MeHR and then everybody else as well.”
Posted in Australian eHealth