Irish Platform for Patient Organisations, Science & Industry

On 14 February 2022, we concluded a series of three discussions around digital health with an inspirational account of the development of Denmark’s Health Portal – Sundhed.dk. Contributors to the conversation included Morten Elbaek Petersen, Head of the Danish Public Health Portal, and panellists Orla Gogarty, Director of Digital Health, Transformation and Partnerships for St. Patrick’s Mental Health Services, Adrian Yeates, Advisory Forum Member, Portal Roll-Out, St. Patrick’s Mental Health Services, Gaye Stephens, Lecturer on the MSc. In Health Informatics, Trinity College Dublin, and Cora Flynn, Epilepsy Nurse Specialist, St. Vincent’s University Hospital.

“As a service user I’m blown away. If I was trying to imagine utopia for a patient – that (the Danish Citizen Health Portal) comes pretty close! (…) The idea that this is for all of your health and that this is all integrated – it’s amazing!” Adrian Yates

It is safe to say that the view expressed by Adrian is shared by many. For years, our IPPOSI patient members have been telling us how important it is for them to have access to their own health information. They speak about the burden of having to reference their own written notes, about the frustration of having to remember everything said while in the consultation room, and about the wasted time spent chasing lab tests, scans and other diagnostic results by phone. They know a portal where they could view all these details at the click of a button, as well as make appointments, request referrals, and communicate with healthcare professionals would be transformative. Slaintecare, which promised to deliver just that – together with a national electronic health record provided some initial hope that progress would soon be forthcoming. However, three years later, patients remain largely in the dark about what may (or may not) be on offer in terms of a portal for Ireland.  

The Danish Experience

To learn more about what is possible, we have turned to our neighbours – and specifically to Denmark – a country similar in size to Ireland but very different in its approach to digital health and citizen involvement. Denmark launched its portal – Sundhed.dk – almost 20 years ago in 2003. At a cost of approximately €8m to implement, and a similar amount annually to maintain, it seems infinitely achievable as a model. Sundhed does not collect its own data, it collates data from existing sources – more than 120 sources including national databases, regional hospital and GP electronic health records, laboratories, as well as GP services.

Using a unique identifier allocated at birth, Danes are then able to log on and view their lab results, vaccination status, hospital notes, other clinical notes, and medicines list. It is also possible to book appointments, renew prescriptions, survey waiting lists, register as a donor and access out-patient clinics. If a person wishes, they can authorise a trusted individual to view their health data – a function that has proved very useful during the pandemic. Indeed, last year over 85 million visits were recorded, with a record 9.8m visits in May alone – a testimony to its utility considering Denmark serves a population of 5.8 million. An app MinSundhed (‘Myhealth’) provides individuals with a user-friendly, mobile, summary version of the main portal. The app has been downloaded 5.2m times since it was launched in 2019, with many downloads taking place in May 2021 when the COVID passport was introduced on this platform.

The portal is also able to be accessed by healthcare professionals, namely GPs and hospitals with a patient in their care. This is very useful for healthcare professionals when they are not ‘on site’ and able to access a patient’s data through the electronic health record of their particular health facility. There are approximately 70,000 visits by hospital professionals and 70,000 visits by GPs each month. Third parties who want to access data must follow a separate route through an established research ethics committee system.

“Green-eyed monster”

The Danish experience sparked an emotive response from our panellists who were ‘envious’, ‘fascinated’, and ‘in awe’. Commenting on the feasibility of a similar initiative here in Ireland further down the line, Adrian Yates questioned our national readiness to foster the culture and trust needed to implement such a model. In his experience as a service user, he has encountered healthcare professionals who have concerns about ‘the empowered patient’, and citizens who have not yet sufficient trust in the state to support the sharing of data nationally. He commented, “I’m of an age where doctors were all-knowing, I don’t think I’ve ever seen my doctor’s notes throughout my life.” Although he acknowledges the work to be done, he does not believe that it is insurmountable; “if you asked me three years ago would I be allowing my staff to work from home on a flexible basis, the answer would be no, but then came a thing called COVID.” He believes showing people the benefits that can be achieved is an important factor in driving the change needed; “Personally, I feel like if I had known a little bit more about what was going on, it might have supported my recovery – and that’s what I have now with St. Patrick’s.”

“We are able to pick up the phone and make a hair appointment, we should have digital tools to be able to do the same for our health.” – Cora Flynn

Start small, think big

On several occasions, Morten stopped to underline the importance of a ‘building blocks’ approach to portal development. He described Sundhed as a journey that has advanced step by step since 2003, and he was firm in dispelling any notion that a ‘big bang solution’ exists. This modular approach was praised by many of the panellists, who all acknowledged that some urgent action was needed in this space. Professor of Health Informatics at Trinity College Dublin Gaye Stephens spoke about the current enthusiasm present within the health information technology community to explore timely, practical solutions, and called on the political and policy leaders to match this call to action with funding and strategy. She acknowledged the need to prevent the development of single-organisation portals and health information tools; responding to Adrian’s concerns that “there is a fear that people will start doing different things with different solutions at different rates – we should avoid this.” Morten was quick to emphasise that an incremental approach by no means impacts the quality of the final product in any way; “There are no gaps – we are talking about information from cradle to grave!”

“Start with whatever you have – share what you have – and when you have a success, you can spread it out.” – Morten Elbaek Petersen

Quality data and system integration is key

As the conversation developed, one key distinction became obvious – in Denmark, quality data existed at the regional and municipal levels, they just needed to create a system to integrate it – in Ireland, we have little to work from. Put simply Morten stated, “You need to have the data out there, you need to have the data systems to link to.” While panellists acknowledged that this is a challenge facing Ireland, they believe a route to digitally-enabled care can and must be found. Orla Gogarty called for a speedy roll out of the individual health identifier programme to allow for linkages to be made between all the different pieces of health data relating to one individual. To involve the patient in data quality, both Orla Gogarty and Cora Flynn spoke about the role of the patient in data verification – and acknowledged the point made by Morten that patients should be able to review and comment rather than correct data contained in a portal.

“It has to be hung on one hook – you cannot NOT have a single personal identifier if we are really serious about giving the best service and integrating the services for citizens in 2022.” – Adrian Yates

Technology can drive cultural change

The pandemic has really highlighted the added value offered by digital health, and many of the solutions which were waiting in the pipeline for several years have been finally ushered in. Having rapidly deployed their own portal when COVID hit, Orla Gogarty, Director of Digital Health at St Patrick’s Mental Health Service describes the challenge of “building a culture to support the implementation of the portal.” The pandemic forced many clinicians to adopt digital health tools, but now that the emergency is over, we must not lose ground; “Technology in a positive way can really empower patients and service users to have access to their information.” This view was shared by Cora Flynn, Epilepsy Nurse Specialist of St. Vincent’s University Hospital who described the onboarding of patients and clinicians as a dialogue; “We do not yet fully know what a patient or a clinician may do or like to do. We need a conversation to happen to know what direction to pursue.” She underlined the need to create the same language around data, so that we all talk about the same type of data in the same way. Morten agreed that getting the healthcare community to think about the accuracy and appropriateness of their notes for a public audience is vital. In Denmark, the decision to give patient access to their clinical notes in 2010 has driven a cultural change within the profession. Adrian suggested that patients too need a period of adjustment; “Having access to a large amount of information can be overwhelming, getting people used to the data that is collected about them and getting people to interact with this data is key”.

“If we had a portal, it would be the beginning of a change in the relationship between patients and healthcare professionals, because we don’t fully understand what a patient might do with their information and how a clinician might respond.” – Gaye Stephens

Involve, involve, and involve some more

Morten spoke proudly about the long-standing relationship of trust between the Danish citizen and the Danish State, stating simply that citizens who are ‘born digital, embrace digital’. Many now expect digitally-enabled care and they expect to be co-creators in a shared health future, however, he was careful to warn that “digitalisation should not grow stigmatisation” and he stated that for the few who do not want to use digital health tools the state makes alternative provisions. Sundhed adopts a ‘user-centred approach’ to its portal development and invites anyone who is interested in health information – individuals or healthcare professionals – to contribute ideas and provide feedback via a User Panel. At its peak, the panel had over 2000 people registered and engaged in testing new functionality on the portal and developing new public awareness campaigns. Adrian applauded this partnership approach, stating plainly; “We need to mobilise the citizen voice, and we need this methodology to be built into the very fabric of how we move forward.” Orla rallied behind the call for strong governance-sharing structures; “We (at St Patrick’s) believe in a rights-based approach – and this includes service users sitting on all of our interview panels and advising us on all of our projects”.

“I know that the team working with the Service User Advisory love that part of their work – it really gives them joy – working with the service users defining and refining how the portal will be used in the future.” – Orla Gogarty

For a full recording of the digital discussion, click here.

To view the outputs from all of our 2021 digital discussions, click here.

For more information on the Danish experience visit Foundation sundhed.dk international – a resource established to share good practice around the Danish experience of the eHealth Portal with other countries and partners who are interested in digital health.

The 2021 IPPOSI Digital Discussion Series was made possible through a combination of IPPOSI resources and a number of unrestricted grants from the following IPPOSI industry members: Astellas Pharma Ireland, Pfizer Ireland, Vertex Pharmaceuticals (Ireland).

18 May 2022
 

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