CeIC director Dr Pamela Hussey tells us about the new research centre for connected healthcare at DCU.
Last month, Dublin City University (DCU) launched a new research centre for connected healthcare, the Centre for eIntegrated Care (CeIC). Based at DCU’s School of Nursing and Human Sciences, the centre will apply health and social care research findings to the delivery of connected healthcare.
Dr Pamela Hussey has been appointed leader of the consortium of academics, industry partners, practitioners and patients at CeIC. Hussey practised as a nurse for 20 years in both Ireland and Australia and she has acquired a healthy collection of degrees in education, health informatics and computer science. Her interest in designing information systems, particularly in the context of health and wellbeing, led to her involvement in developing health informatics standards at an EU level.
This blend of direct healthcare experience and informatics expertise helps inform Hussey’s new role as CeIC director. “I consider that the role of nursing in designing care for the digital patient is important,” she said. “Chronic disease is core nursing territory and we are very much the litmus paper for change in healthcare.”
What work will you carry out at the Centre for eIntegrated Care?
Firstly, it’s about designing information architecture in partnership with the HSE to support eHealth Ireland and advance the integrated care agenda. This involves defining properties of health records to optimise communications. We are working in partnership through the centre to make interoperability a reality in health and social care delivery in Ireland.
Secondly, our role relates to sustainability of infrastructure and cultivating innovation through health ecosystems and communities of practice. CeIC provides scholarships, acting as a springboard to assist practitioners, patients and industry in Ireland to assimilate, learn and do. We are building cases to showcase how this approach can work in the Irish context. For us, knowledge transfer is important and we are dedicating time and sharing expertise to achieve this. Members in CeIC want to grow capacity with focused education and training sessions to progress a sustainable health and social care programme for citizens in Ireland.
How would you describe the integration of healthcare with digital platforms and services to date?
Integration of healthcare with digital platforms is the first critical building block in the development of new pathways of care as defined by Sláinte Healthcare. The associated architecture can be compared to building a house well on a solid foundation, or badly on sand if designed poorly.
Connecting health information across the continuum of care has, to date, been diluted with an alternative competing set of single organisation agendas. This is because, traditionally, our funding structures were established this way, which is well articulated in national policy with recommendations for action. The broader systemic issues have traditionally been considered less of a priority, but this is changing.
I believe that timing is everything. Despite the fact that Ireland’s engagement in funding for e-health has been later than most OECD countries, we have great opportunities to learn from other countries, both successes and failures.
‘We need to stop thinking about projects and think about people using our services’
– DR PAMELA HUSSEY
There are some detractors to the concept of an Electronic Health Record. What are the most common criticisms you’ve encountered and how do you respond to them?
My response to detractors is to build strong infrastructure for interoperability nationally through core e-health services. It is well documented through the World Health Organisation integrated care framework that ‘silo’ curative fragmented models of care will not provide us with answers. We need to stop thinking about projects and think about people using our services.
I think that Bertrand Russell’s quote from the 1950s – “The central problem of our age is how to act decisively in the absence of certainty” – still rings true. There is no doubt we are living in a time of uncertainty, with the projected demographics for chronic disease and older populations, but one way to act decisively is to see through the transition to digital health and ensure that the integrated care agenda stays firmly at the forefront. We need to ensure that a national interoperability framework is designed and in place. This framework needs to be developed by eHealth Ireland and have capacity to scale and grow organically to support our service delivery programmes.
Our response in CeIC is to contribute to this design and provide independent expertise for the taxpayer and the HSE.
One of the biggest concerns in services such as this is security. Is that something you have to consider as part of the work you undertake at CeIC?
It certainly is something that we need to consider. The legislation in regard to patient confidentiality and security is in progress with new legislation published through the Department of Health – one recent example being GDPR. CeIC will align to emerging legislation and seek advice from relevant public service bodies.
Do you think there’s work to be done in getting the public to trust these systems and cooperate with them, particularly in light of recent healthcare failings?
I think there is a trust issue. We have, in recent times, seen some difficult and desperately sad cases. I doubt that there are any of us who do not have a family association relating to experience of our health system that could be better.
From my perspective, it’s about accountability and responsibility, and this has to be underpinned by transparency. I think there is little appetite for the public to engage and trust systems otherwise.
CeIC works closely with groups such as Irish Platform for Patients’ Organisations, Science & Industry (IPPOSI) and will continue to do so as we progress. As the director of CeIC, I am a member of IPPOSI and will continue to participate in the workshops. A key member of our team in CeIC is Dr Veronica Lambert, who has been awarded the Public and Patient Involvement (PPI) Ignite award from the Health Research Board, and we are currently recruiting patient representatives for our group through our existing networks.
Are there milestones on your roadmap that you can share with us?
As the director of this centre and the associated consortium, I can confirm that we are committed to designing an interoperability framework to support Sláinte Healthcare. Key projects that we are investing time in relate to a national framework for dementia registry through Dr Louise Hopper.
Achieving an interoperability framework to support a national e-health programme is a complex, large and difficult task but we believe it’s the right path to improve health and wellbeing for Irish citizens. This is why we have established the centre and dedicated our time to the design process. The end point for us is the horizon line.
Where do you want to be with this work five years from now?
For CeIC to have contributed to the eHealth Ireland strategic plan and provide much-needed implementation research to address national policy plans such as those identified in Sláinte Healthcare and Healthy Ireland.
Personally, as director, my goal is to grow our national and global community of practice, to support talent and innovation, build capacity in health informatics in Ireland, and empower both patients and healthcare professionals to advance self-care and self-care management support – or, as our recently appointed HSE chief information officer suggests, shift left!