Better care with aggregated data

We are born, we live and we die. During that time, our life's health history ends up in a number of different registries and record systems, depending on where we are in life and where we live. Child health care, student health, health care advice, health centers, private care providers, regional hospitals and municipal care for the elderly are just a few examples of different actors that all residents sooner or later meet during their life's journey and each of them in turn uses different systems to register your health data. Often the systems have difficulty working together and the way the information is documented also looks different.

- We see how a municipal nurse today has to count on spending more than an hour just to get to grips with the task of which medications a patient received during a hospital visit, says Karin Bengtsson, strategist at the municipalities and regions' digitization company Inera.

With the example, she only illustrates with a small part the fragmented picture of how it works with data in care and social care. But it is oh so important. If we are to cope with the future in Swedish healthcare, we will either need significantly more healthcare workers. Or you need to deal with demanding time stealers, comments Karin Bengtsson.

Healthcare data in multitudes of systems that do not communicate with each other is such a time waster.

Increased risks of mistakes and mistreatment of patients is another consequence, a high administrative burden another.

Inhibits innovations

Daniel Forslund, development manager for digitalisation, research, innovation and life science at Vårdföretagarna, the industry and employer organization for private healthcare providers, sees small trickles of data that work in parts, but no functioning flow. Lock-ins in old IT systems that all local actors are forced to adapt to, but that inhibit innovation for healthcare providers operating in several regions, non-compatible systems that slow down technological development and create a worse working environment, are some of the examples he gives.

- The lack of a functioning health data flow is the root of much evil. Long waiting times, stressful work environment for staff, etc. Many of the problems are due to the fact that data management is complicated and for us it is high on the agenda.

The solutions need to be built by those who know both healthcare and technology, he believes, highlighting the own industry cooperation between Vårdföretagarna, TechSverige, SwedishMedtech and LIF. The purpose of the collaboration is to agree on common formats for health data and make today's and tomorrow's IT systems compatible. But, he points out, the initiatives need to come from several directions.

- A clearer mission is required from the government, although we see it as hopeful that it is expressed in the Tidö agreement that they want to invest in the digital infrastructure of healthcare. Clear leadership is needed here if it is to go away, says Daniel Forslund.

It is not something that everyone can solve on their own, agrees Karin Bengtsson at Inera.

- We need everything from new legislation to coming together and cooperating. fundingis needed, because sharing data is not free. And there needs to be business models that make it financially possible to implement for both large regions and small municipalities, she says.

Breakthrough for research

The benefits of a better functioning data sharing of health data do not only concern the immediate effect on the quality of care. Access to data has also become one of the most important assets of our time, especially for the development of knowledge in biomedical research. Anna Wedell is a professor at Karolinska Institutet, as well as senior physician at the Center for Congenital Metabolic Diseases. Her involvement in developing working methods that allow a patient's entire genome to be analyzed has made it possible to diagnose rare hereditary diseases and provide treatment in a way that was not possible before.

- It is difficult to assess the large amounts of data sets that make up an entire genetic mass. We do not have the knowledge to interpret everything and there are thousands of different conditions. But if we know approximately what we are looking for, we can limit ourselves and target the analyzes correctly. We have developed a multidisciplinary approach where the new techniques are integrated with detailed clinical and laboratory medical investigations. By combining different types of data, we can get sufficient precision to find the needle in the haystack faster and more safely, she explains.

Much of the work, however, requires manual laying on of hands and collecting the information from different systems. In other words, synchronized care data would contribute to faster success in both care and clinical research and enable tailored treatments on a larger scale.

- The possibilities are enormous. But as long as the data is locked in different places in the systems, we cannot benefit from the technological leaps and knowledge explosion that we are witnessing today, she states.

How to find solutions?

At Vinnova, we see how an increased use of care data can increase the quality of care and make it more individualized and equal. But in order to arrive at functional and sustainable solutions for a better use of all the available data, many different dimensions need to be taken into account. Law and regulations are a challenge, each individual's privacy must be protected and secured. It is also about infrastructural issues, common standards and changing cultures and working methods that differ between regions, municipalities, companies and other actors.

In one of the largest the calls for proposals on health data ever within Vinnova's area of sustainable precision health actors in collaboration will therefore be given the opportunity to tackle identified challenges and test new solutions. The work must be done using a unique way of working, so-called system demonstrators.

- We want to provide the opportunity to develop solutions in an environment as close to reality as possible. A system demonstrator is a delimited and controlled part of reality, where you can see how a certain solution affects the whole and see what changes need to be made in a way that can then be scaled up. It is not enough just to have a technical solution, but all different perspectives need to be tested and evaluated in parallel, says Anders Brinne, area manager for sustainable precision health at Vinnova.

Up to three system demonstrators can each be financed with a maximum of SEK 30 million, spread over four years. In the mobilization work before the call for proposals seven preliminary study projects have already been carried out. The hope is now that several actors will join in with ideas that can ultimately improve care with the help of the opportunities available through care data.

- It is simply about showing the enormous potential that the sharing of health data can mean, says Anders Brinne.

Here you will find the offer System demonstrator for utilization of data from health and care

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What is a system demonstrator?

When we introduce change and innovation, many different processes in our everyday life are affected. What the impact will look like can be very difficult to predict and usually cannot be tested in a lab. How do laws and regulations need to change? How are our behaviors affected? What technology is needed? At the same time, it may be impossible to test the new innovations in a real environment where infrastructure and business models are not adapted to the new innovations – it becomes a mission impossible.

In a system demonstrator, that work takes place in a real environment. As for example when the state and industry jointly invested in the project Reel with electric transportation. 40 battery-electric trucks will roll through Sweden and give us an overview of what is needed in the form of changed behavior and regulations in order for the transition to an electric transport sector to be possible.

Five perspectives that help us see what needs to change

A system demonstrator needs to cover five different dimensions or perspectives, to give good answers to what needs to change in order for a sustainable changeover to be achieved.

• Technology, products and processes
• Business models and procurement
• policy and regulations
• Behaviors, culture and values
• Infrastructure