Collaboration through technology for refugees
In early 2010, Marienne Hibbert, Beverley-Ann Biggs and colleagues won a grant from the University of Melbourne's Institute for a Broadband-Enabled Society to develop a web-based electronic health record to better coordinate healthcare for refugees and newly arrived immigrants in Victoria.
Paediatrician Georgia Paxton was awarded a fellowship from the Windermere Foundation fund to her work on the project, and a Melbourne firm, Arcitecta, was contracted to begin development of the system at the Royal Melbourne Hospital.
The idea behind what has since become known as the Clinical Audit Research electronic Health Record (CAReHR) was to both share data with refugee clinics at other hospitals and also to provide real-time surveillance for emerging health issues.
The project then received further funding from the Victorian Department of State Development, Business and Innovation to expand the use of the CAReHR across four hospital-based refugee health clinics, and to link the system to the primary care sector through a Refugee Clinical Hub, using the cdmNet chronic disease management solution for GPs from Precedence Health Care.
Currently, the Refugee Clinical Hub is fully operational in the Refugee and Immigrant Health Clinic at the Royal Melbourne Hospital, and the Immigrant Health Clinic at the Royal Children's Hospital. Clinics at Dandenong Hospital and Geelong Hospital are shortly also to come on board.
As part of an integrated patient care system, CAReHR provides a record that is easily configured by clinicians, can generate clinical notes, GP reports and patient care summaries automatically, can be shared between hospital and general practice clinics, and even provides basic translated lists of problems in the patient's own language.
CAReHR also has an underlying federated clinical and research database that can provide real-time surveillance of infectious diseases such as malaria, tuberculosis and hepatitis B that is already being used for health monitoring and research by the Royal Melbourne Hospital, the University of Melbourne, and the Royal Children’s Hospital and Murdoch Children's Research Institute.
The system actually had its genesis some years ago, when several members of what is a tightly knit network of clinicians with an interest in refugee health began discussing how best to link up the different clinics serving refugee families as well as to conduct better research.
This network included Dr Paxton, head of immigrant health at RCH; Professor Biggs, head of the International and Immigrant Health Research Group (IIH) in the Department of Medicine at the University of Melbourne and a consultant infectious diseases physician at RMH; and Dr Hibbert, then head of the BioGrid research platform and now clinical integration manager at Precedence Health Care.
It also included Henry Gasko, project officer for the refugee health clinic; infectious diseases specialists Karin Leder, Carolyn Marshall, Katherine Gibney, Thomas Schulz and Joanne Gardiner from RMH; Chris Lemoh and Andrew Block from Dandenong Hospital; and Eugene Athan and Kate McCloskey from Geelong Hospital.
What these clinicians all agreed was needed was a system to connect patients, practitioners, hospitals and researchers. Working with Arcitecta, what they have come up with is a system that is completely configurable at the point of care and can be used for any patient group, and for any condition.
“Refugee health is about population health, but at an escalated pace,” Dr Paxton says. “What I knew some years ago for kids from Sudan, is not always relevant for the groups from Burma, or Iraq…and there are different elements in clinical care for people arriving via boats or those have been in a detention centre.
“It is an area of healthcare where you need to have excellent surveillance and responsive systems. There are particular challenges in working with groups who have multiple and complex health issues, especially when all of that care is occurring with the assistance of an interpreter.”
In addition to improving surveillance and clinical audits, the network wanted to improve information flow between practitioner and to patients as well. A bespoke system designed by the clinicians themselves was the obvious answer.
“They had next to no money, but I could see that it was a really good opportunity to solve some complex problems,” Arcitecta's CTO Jason Lohrey says. “It was also something we could get our teeth into that had long legs.”
Dr Paxton took on the job of scoping out how the different clinics worked, their particular workflows and the systems already used, and conducting focus groups of clinicians to understand what they needed from an electronic system and how to maximise dual clinical and research functionality.
“I surveyed the clinicians about the 10 most frequent clinical problems they had identified in the focus groups, and asked them how we assess risk and what we look for in the history and examination,” she says. “We put all of that together and came up with specs for these problems.
“We put together a set of initial screening tests as we wanted to have decent epidemiological data. At that time I started working more closely with Arcitecta and it became apparent very early on that there was scope to develop a completely configurable system, and that is the real strength of CAReHR.”
Dr Paxton says the clinicians using the system have been able to define every point in the system without constantly referring back to the developer.
“I can define all of the parameters, which might be a risk factor or a symptom or an exam finding, or it might be a screening questionnaire. If I want to put a screen for an emerging issue or a patient satisfaction questionnaire, I can enter all of those questions and have complete control over the defining parameters.
“Then I can combine the parameters into a problem and I have complete control over the problem definitions, so I have a system that I can set up to collect information on common things, like asthma, or rarer diseases like malaria or leprosy.
“This is flexibility that you don't get in a large-scale product. And because I set it up, I can do whatever I need it to do. I can set it up to define all of the parameters, the pathology, and referrals – I can set up CAReHR for my service.”
She also says one of the biggest strengths of the system is that clinicians don't have to double-enter any data. “The parameter appears across different problems,” she says. “You can use it as a checkbox system because you can just tick the boxes or you can use it as a free text system for your notes. There are different user styles.”
The system is based on Arcitecta's Mediaflux technology, a data management platform that is able to manage any type of structured or unstructured data through the capture and storage of metadata fragments, stored as encoded XML.
In the case of the CAReHR, it has a web-based front end but the back end is what Mr Lohrey describes as a loosely coupled federation of systems.
“Clinicians will connect to the system locally but in the back end, those systems are interconnected in the web,” he says. “The idea is that you can create any number of interconnected federations.
“If one hospital wants to put this system in, and somewhere down the track it wants to share information with a clinic in another place, they can choose to have their own local interconnect. The locus of control resides with the owner of that system. They decide who comes into it, rather than having a centralised control of access.”
Dr Paxton says one of the strengths of the CAReHR technology is that it is able to handle the different requirements of different clinicians and services, such as paediatricians and adult physicians. How the system is configured is in the hands of the clinicians themselves.
“We used the differences in clinician requirements to develop a system that can cater for all needs,” she says. “We were developing a system to meet the needs of clinicians at four different hospitals in four different health networks, which again has enabled flexibility.”
Mr Lohrey says one of the objectives of his company and its technology is to obviate IT people from most processes. “We try to build systems that put the capacity to manage the system with the people that use it,” he says.
“It drives me nuts that there are people who want to collect information in one area, and someone builds a bespoke IT system for them, and then they want to collect information from somewhere else, and someone has to build another bespoke system.
“Then you need another project that looks at how you get information into each system, and then another project that looks at how we interconnect them. It's just not right in my view.
“We want to create something that removes us from the process as much as possible. It didn't seem right to me that you've got all of these bespoke systems – what you are doing is removing the ability for people to interconnect information easily because you've got all of these processes, money, people, and bureaucracy.”
Translated terms for problems
Sharing information is also something that Dr Paxton is passionate about. She regularly gives copies of everything she writes to the patient, but for her non-English speaking families, that usually means she needs to have her notes read by an interpreter on the patient's next visit.
It is this added difficulty that has led to perhaps one of the most innovative parts of the CAReHR – the ability to provide a translated term for problems.
“We had the ability to give people a copy of their record, so we added the facility to include a translated term for problems,” she says. “Then when you print up the patient summary, if their language matches a translated problem name the translated term displays on the patient summary.
“It is a basic start in addressing language barriers, but at least it is a start. Because the system accepts all scripts, in the future, there is the possibility to include more detailed patient instructions and information.
“I think if you can get a system up and running for vulnerable, non-English speaking people who are recently arrived, you can do it for anyone.”
CAReHR is currently integrated with existing scanned hospital medical records, and the hospitals’ cloud-based IT platform, so there is no need to have different systems to access and interrogate different data, no matter where or in what format that data exists.
CAReHR can import hospital pathology and administrative data, facilitating single point patient care, and there is potential to link with larger scale hospital electronic records as these become available.
As one of the driving forces behind the design of the system is to improve information flow, the network always wanted to include the primary care sector as well which is where cdmNet comes in.
Linking with primary care
cdmNet has been designed to create shared care plans that are initiated by the GP, but with input and viewing access for specialists and allied health practitioners. This form of integrated care is particularly important for refugees and newly arrived immigrants who often have complex health needs and who typically see both primary care and specialist providers.
Precedence Health Care's Dr Hibbert has been involved in the project from the start, and had worked briefly with Arcitecta in the past. She is keen on providing patients with access to their own information as well as better sharing of information between primary and acute care.
“One of the key things we wanted, in addition to the patient having access, was interpreting services,” she says “We are solving a multi-billion dollar problem with a case study in refugee health.”
Dr Hibbert says she has always found Arcitecta's technology to be impressive and useful. “It means you get a system which is much easier to configure and add to as you go,” she says. “From my perspective, it was good that underlying the Arcitecta system was a federation for amalgamating or querying hospital data for research purposes.”
As Arcitecta built the CAReHR system for the hospital clinicians, Precedence continued working in the primary care sector to use care planning to assist with health and issues such as the resettlement issues faced by new immigrants. In many cases, it is not just people’s health issues that need multidisciplinary input, but their social circumstances, housing, education and employment needs as well.
“Conditions that are more common in recently arrived refugees would automatically be picked up as a diagnosis within the GP desktop system, so when the patient comes in, you can create a shared record, and have a plan to address these issues as well as chronic health issues,” Dr Hibbert says. “The bit that was missing was the glue between cdmNet and the hospital.”
Within the CAReHR, clinicians are identified with a cdmNet number if they are involved in the care of a particular patient. They can then click through to the cdmNet record and download information from that into the CAReHR.
“What the GPs want is to be able to also get all of the information from the hospital Arcitecta system,” she says. “At the moment it is in the form of a summary letter or discharge summary, and that gets downloaded into cdmNet so the GP can also see what has happened in the specialist refugee clinics.
“One example is with a positive Mantoux test. You need to go to the infectious diseases physician to sort out whether it is or is not latent TB and the ongoing program of care. [What] the GP needs to do and what the hospital physicians will be doing – they (the specialists and GPs) are much more comfortable if they both have the information.”
In addition to disease surveillance and care of patients in both the acute and primary care settings, a lot of the information contained within the CAReHR is incredibly useful for research purposes. RMH's Professor Biggs says the treatment and research results will be crucial in assessing existing guidelines and developing new treatment guidelines for common issues such as vitamin D deficiency, anaemia, malaria, hepatitis B and tuberculosis.
“The CAReHR system was originally set up as a clinical tool to replace a paper-based system, but can also be used for research across the four hospitals as well as GP clinics,” she says.
“The ability to recruit patients from the pool of hospitals involved in CAReHR, using consistent data, means we can track disease patterns in a larger cohort of refugees and report research findings in a more timely and targeted manner.
“It is particularly important to get this information quickly as it means we are in a better position to implement preventive health measures, such as screening for malaria soon after people arrive in Australia. We can do this based on our assessment of the prevalence of disease from a particular source country, or within a particular patient group.”
Professor Biggs says the CAReHR has good inbuilt analytics so researchers don’t need to re-enter data, and the way the data is collected by a simple tick list of common conditions means it will be easier to get an over-arching ethics approval for a range of research projects.
“This is a significant advantage in terms of the value we can deliver from our research,” she says. “It speeds up the time from enquiry to insight, leading to more effective patient interventions.
“Our ability to capture and securely share data from our clinical and research studies means we can improve the treatment for infectious diseases and other conditions in refugees by making sure all members of the patient’s care team have access to a complete and accurate set of data, across campuses and across the different healthcare systems we use.”
Overall, the participants in CAReHR, cdmNet and the refugee clinical hub believe the value of this solution will be to provide evidence-based and timely management and to integrate primary and specialist care teams, so people achieve good health and avoid long-term complications and harm.
Posted in Australian eHealth