The day opened with Chief Clinical Information Officer Yvonne Goff welcoming all delegates and reminding us of the leading role the Council of Clinical Information Officers is taking to deliver technology that is clinically led and patient focused in Ireland. Yvonne spoke next of the quarterly eHealth Ireland Ecosystem events which continue to re-enforce connections between eHealth stakeholders – attracting and encouraging participation from clinicians, researchers, patient organisations, start-ups, and innovators. She told the gathered members that the expert is in all of us who have ideas to deliver enhanced healthcare and the key to building on this is working together in partnership. The Electronic Health Record was identified as our main priority and Yvonne stressed the importance of continued clinical input in driving the initiative forward. Upcoming initiatives such as the online Innovation in Healthcare Repository and Clinical Risk Management Framework were outlined before Yvonne finished by welcoming our first speaker of the day Eamon Coyne.
Eamon is the OoCIO Enterprise Technical Architecture Lead who is working on the Irish-EU cross border Patient Summary and ePrescription project. He outlined the aims of the project which are that by 2020, in the event we require unscheduled care anywhere in Europe (e.g. we get chest pains when on holiday in Spain), we will be able to call into their local medical centres and clinical staff can logon to an online portal where they can view our patient summary and clinical data. This will include important information such as Alerts, History of past illness, medical problems and current medication summary. The second part of the project will be the ability for pharmacists to access ePrescriptions from different countries.
Eamon explained the technical and language challenges faced with integrating different countries ICT systems and detailed how the construction of common data sets is done in order to ensure that nothing is lost in translation. In order for the project to work across the whole of the EU there has to be organisational , semantic and technical interoperability all working together and while Eamon has the technical background he explained how he was indebted to the CCIO for the clinical support it was able to offer the project. It is a most ambitious and impressive project and testing is scheduled to begin in Q4 of this year with Cross Border Go live in Q3 of 2020.
The next speaker was Dr Tony Shannon, Director of the Ripple Foundation who discussed how Open Platforms can transform Healthcare. The Ripple Foundation is a clinically led team working towards supporting the move to an open platform based healthcare system. They support open source, open standards and an open architecture that can be used worldwide. Dr Shannon explained the benefits in costs and time in using open architecture to deliver solutions which can be shared for the benefit of other healthcare providers. He told us that in a time of great transformation in Healthcare no matter what we do, we can’t make staff work much harder, instead we need to work smarter. An example of how this is not working is time wasted in the USA where doctors need medical scribes working alongside them to allow the Doctors to interact with the different ICT systems. He next spoke of his experiences in the UK where they went to the NHS and asked that 1% of the ICT budget be given to delivering Open source solutions and the changes that is already delivering in not having to wait on large corporations to deliver solutions that cannot be ported to other areas .He asked that we consider introducing Open Platform solutions with the following components as part of our strategy going forward. 1: Patient Centred, 2: Vendor and technology Neutral, 3: Federable, 4: Open Standards based, 5: Shares Common Information Models, 6: Providing Open API’s, 7: Supporting Open Data.
We broke for coffee and on return Dr Aileen Butler, Principal Clinical Scientist, Our Lady’s Children’s Hospital, Crumlin, gave a talk on Medical Genetics and the Challenges to Information Management.
Dr Butler started by outlining the recent advances in Genetics in Ireland and the potential life changing benefits of using genetics for targeted medical intervention. Examples she gave were firstly someone with an identifiable inherited genetic disorder for adult onset cardiac mutation could have intervention at an early stage before the mutation causes health problems. The second example was breast cancer patients that can be genetically screened to determine if they will respond positively to parp inhibitors and finally cystic fibrosis patients can benefit from targeted clinical trials rather than trial and error treatments.
The Information Management challenge is when trying to determine when a result of genetic screening is clinically actionable. If the result of tests indicates a genetic variation there is no clinical intervention required. If the result is a mutation there is a need, but when the result lies in the middle, a “Variant Unknown Significance” then a lot of other factors have to be considered and a multidiscipline team can spend a half a day on one variant before making a decision. The reason for this is the stakes are so high. Intervention in these cases involves reproductive decisions, prophylactic surgery and other treatments. They need to use best known data to determine whether to reclassify the VUS as clinically actionable.
Dr Butler said this was a snapshot of the risks involved, and why information management is so important to medical genetics. She hoped that she could use the CCIO to bring a broad expertise of clinicians, ICT and academia to help her with what is a huge complex problem and also hoped that today’s presentation would start the conversation .
The final item before lunch was a Seminar on SNOMED given Theresa Barry, (Project Manager (PMBoK), Cork University Hospital) and by Ian Green, (Europe and Clinical Engagement Business Manager, SNOMED International)
They explained that SNOMED CT (Systemised Nomenclature of Medicine for Clinical Terms) is an internationally recognised system for defining terminology use for electronic health records and it is also a collection of medical terms providing codes, terms, synonyms and definitions used in clinical documentation and reporting.
SNOMED aims to deal with challenges such as those mentioned previously by Eamon Coyne, where in different countries some words can have totally different meanings. An example given was that the Spanish spoken in Spain is quite different to the Spanish spoken in South America. Theresa defined SNOMED as Global Clinical terminology and said that for inclusion in SNOMED they had to determine 1 – How good is the information 2- Does it make sense, 3- If this is moved somewhere else can someone else use it for the purpose you have intended. SNOMED continues to expand in Ireland and the HSE holds the licence, but it can be used by all healthcare providers. Work is on-going identifying the people who are to be the authority to sign off on naming for specialised areas such as diabetes and ensuring that protocols for areas such as this will be international to ensure data can be shared across national boundaries safe in the knowledge there will be no confusion about definitions or meanings.
After Lunch Joe Ryan gave a talk on GDPR and he began with a warning that the subject was almost as interesting as watching a freshly painted piece of wood dry out but he said he would try and make it interesting. He advised that GDPR is an EU regulation which means that even if not signed into Irish law it will be European law in 9 days and we will be bound by it. It is tasked with regulating how we process data and this includes gathering, storing, retrieving, changing and sharing data. The new regulations mean individuals have new rights, e.g. if they seek their data, it is not an option to refuse them. The new regulations have financial penalties of up to 1 Million Euro’s per breach of the new regulations.
A key requirement of the new regulation is Consent of the individual will be required if any of their data is to be used for research. Another requirement is data must be encrypted when it is transmitted. For those who can’t wait to get more information on GDPR there is an FAQ on hse.ie but for those who still want more the good news is there will shortly be mandatory GDPR training for all staff provided on HSEland
Our final speaker was our new CIO Martin Curley. Martin spoke about the quality of the eHealth Strategy and how he is looking to use the Capability Maturity Framework to evolve from the strategy we currently have to delivering a world class eHealth offering.
One potential shared vision for eHealth he outlined was the triad of Care Networking which shifts from Institutions to preventative, proactive, mobile, home based & community care, Care Anywhere which shifts from solo to community and team based care and Care Customisation where we shift from population based to person based prevention and treatment.
Martin spoke about Moore’s Law which was an observation made in 1965 by the co-founder of Intel, George Moore, that the numbers of transistors per square inch would double on integrated circuits every year. This became the innovation strategy for the semiconductor industry worldwide and became a challenge which drove growth in the industry from companies worldwide. Martin told us he believed there is an opportunity for us to create a Moore’s Law for eHealth in Ireland if we are willing to rise to this challenge.
The next item discussed was working the National Health Strategy to determine what the ICT priorities are, and what should be our optimal sequence of delivering systems. Martin proposes the use of a data driven scientific approach which will deliver a much higher conversion efficiency which ultimately delivers a higher value for money spent.
Martin finally spoke of the importance of the Council of Clinical Information Officers in driving innovation and progress in eHealth. Prior to this in his previous role, he worked in the semiconductor industry where 70% of the biggest innovations over the last 30 years came from lead users and not from the labs or the boardrooms . Martin spoke of using Quadruple Helix Innovation where Government, Academia, Industry and Citizens collaborate together to deliver structural changes beyond the scope any organisation could achieve on its own .He finished with an explanation of the shift left continuum of care where every time we shift to the left we will reduce the cost of care and improve the quality of life of our citizens.
The meeting concluded on this optimistic note and the attendees left, having learned a lot during the day, and having made more valuable contacts and partnerships which may lead to important innovations and advancements in eHealth into the future.