Department of Computer Science
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The United Nations’ Agenda 2030 is built on the Sustainable Development Goals, which provide a path for a better world. One of the goals focuses on ensuring healthy lives and promoting wellbeing for all ages (SDG3). Although a lot of work remains to be done globally, the pre-COVID progress in child and maternal mortality rates as well as the increase in immunization coverage gives hope for real change.
While international organizations and countries are scrambling to offset some of the most wicked global health problems, a digital transformation of the field is also taking place. The world caught a glimpse of this transformation when the pandemic forced a sudden shift to a reality where the role of digital services became dominant over-night. It shed light on what our current digital health practices, systems and infrastructures amount to, and how inclusive or equal they really are.
Senior University Lecturer Sari Kujala was part of a Finnish study that examined how citizens from vulnerable groups – such as the elderly, unemployed and immigrants – made use of digital public health services during the pandemic.
‘Many increased the use of digital tools like WhatsApp, but it did not translate to increased usage of eHealth services among these vulnerable groups,’ says Kujala, who studies digital inequality at the Department of Computer Science at Aalto University. ‘The study shows that there’s still a barrier in engaging with digital health services among citizens, due to their poor usability.’
Kujala has studied the usability of digital services for two decades and has focused on the experiences of patients in digital health services for the past years. Her research has shown that the above results were not just pandemic-specific findings nor limited to vulnerable groups.
‘The usability of digital health services in Finland has not really improved in the past 15 years from the perspective of patients,’ says Kujala. ‘It is worrying, because only through high-quality services are we able to get everyone onboard.’
The negative experiences that patients routinely bring up in Kujala’s research are related to concerns about privacy and the understandability of comments from medical professionals. Some patients are not comfortable with the level of access to their records and the way professionals are accustomed to describing the physical features of a patient quite bluntly.
To make the future of healthcare more inclusive and accessible for all, the needs of patients must be included in the design of digital health services, Kujala explains. Her research has also shown what the positive effects of eHealth could be.
‘Digital access to personal health records and the entries of care professionals increase transparency – patients are able to see how medical decisions about them are made, and follow up on ongoing processes,’ says Kujala. ‘This sort of transparency increases the trust of citizens towards the whole healthcare system.’
The stakes are high in Finnish healthcare, where costs have doubled in the past two decades.
‘If we get this right, we have the power to change healthcare as we know it,’ says Kujala. ‘Currently around 97% of healthcare is sickcare – taking care of actualized illnesses. Through digital health services, there is a possibility to shift the focus towards preventative healthcare, which could cut down costs and improve people’s lives dramatically.’
The potential of preventative healthcare has been reiterated by senior participants in Kujala’s ongoing research in the DigiIN consortium, in which she is the deputy director. DigiIN’s research has found that especially older people hope that digital services could do more to support positive transformations in daily habits to lead healthier lives.
Yet, patients are only one part of the digital health transformation.
Sari Kujala, senior university lecturer, Department of Computer ScienceIf we get this right, we have the power to change healthcare as we know it
User experience among Finnish healthcare professionals hasn’t increased either, says Johanna Viitanen, assistant professor at the Department of Computer Science at Aalto University who studies usability and user experiences of health and social care information systems.
‘Many clinical information systems can't support the daily work of physicians and nurses. They often increase workload and stress,’ says Viitanen. ‘At their worst, these complex systems with poor usability can lead to technology-induced errors and even endanger patient safety.’
Viitanen’s motif is to make professional voices heard and to emphasise the wellbeing needs that arise from the everyday lives of patients. This would effectively mean turning current thinking on its head and approaching the development of digital systems from bottom-up. There’s still plenty of work to be done in the transfer of this knowledge to the actual design of digital tools in health and social care.
'We have only begun to understand the crucial role that user experience must play in designing these systems,’ says Viitanen. ‘It is no longer regarded as a nice-to-have feature, but a critical requirement which influences the wellbeing, efficiency and motivation of professionals.’
A recent Finnish experience in the rollout of a major digital health system has been the Apotti project, which began in 2012. It is built on Epic System's platform, and claimed to be the world’s first integrated health and social care data system. The rollout was overshadowed by the pandemic and was met with a mixed reception among healthcare professionals, who have criticised Apotti for its costs and usability.
‘These are large-scale and complex systems, which have various end-user groups and contexts. The challenge is to customise the system to meet the needs arising from these groups and contexts – to provide the professionals a tool to support their daily work and to provide the citizens digital services of pleasant user experience,’ explains Viitanen.
Finnish and Nordic experiences may have bearings for the global health transformation as well. The Finnish system is unique in its level of digitalisation as well as the merging of the health and social care services. The country is also home to some of the most pioneering research on user experiences of professionals. The aim has been to systematically study and support the development of the services and the first national surveys were conducted in 2010 for physicians.
Viitanen has taken part in designing these surveys and reporting their findings to various stakeholders, for example through the Nordic eHealth Research Network (NeRN).
‘End-users should be more involved in the development of these systems,’ says Viitanen. ‘This would mean employers allocating sufficient time for participation and developers integrating the views of health professionals into the design of these complex systems.’
These surveys are becoming more important as major healthcare digitalisation projects are rolled out. The challenges have not gone unnoticed. There are also around 300,000 digital health apps available to consumers in the Nordics, with varying standards and levels of privacy without a mutual understanding of what a sufficient user experience should be.
In the NORDeHEALTH research project, Kujala and her colleagues are developing a Nordic understanding of what usability should look like.
‘We’re developing evaluation metrics with our Nordic partners to create a framework for comparing and measuring user experience,’ says Kujala. ‘With the framework, we will be able to determine when a service is up to par in terms of usability and whether a digital health service should be rolled out at all.’
The project members are also developing a certificate, which businesses could use to validate the necessary level of user experience, per mutual Nordic standards.
‘The public sector is putting millions of euros into these projects, so we must hold service providers accountable and get quality services in return,’ says Kujala.
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