Making data work for patients: Interview with Dr. Åsa Cajander
Increasing the interoperability of e-health systems is the focus of one of the workshops at Uppsala Health Summit 2018. The workshop is led by Dr. Åsa Cajander from Uppsala University, Associate Professor of human-computer interaction with a special focus on healthcare and e-health. In this interview, Åsa explains some of the hurdles with data in healthcare and the urgency of addressing the challenges.
Across the world, information technology has the potential to radically transform the way health services are delivered. Systems that allow better use of data are at the heart of this change. But the road to simplified and usable systems that can lead to better and more equal care is paved by challenges; in most countries it is still a patchwork of disconnected technical, professional and administrative architectures that need to find ways talk to each other.
"I have been personally involved in research with doctors, nurses and patients on how they use and process the data that is generated in health care so I really know there is a need out there to bring the challenges around digititalization to the table and discuss solutions," Åsa explains.
Can you give an example of a challenge?
"For example when it comes to clinical statistics on what treatments that work best, cancer doctors are completely inundated with information and their ability to process that information and translate it into decisions about care varies a lot from setting to setting. This means that a patient in different parts of Sweden receives unequal quality of care and that is a situation we need to address!"
"Also, there is a lot of knowledge among patients that we are not using. We need to get better at putting the patient at the centre and help those who are open to sharing their experience contribute to strategic decisions at a national level. Especially among chronically ill patients you often meet patients who are experts on their own sometimes quite narrow condition and that is knowledge that we must use!"
How can you generate a discussion around these complex issues in a workshop with participants from all over the world with very different experiences and pre-conditions in their luggage?
"You can always discuss what the vision should be and the necessary steps that healthcare workers or patients need to take to reach that goal in different settings. We will use a workshop method based on Critical Incidents that can be used to reflect on, and critically analyze, different experiences and practices in healthcare. The method was developed by members of my research team to evaluate eHealth designs, to learn from patients’ real stories and to generate a joint reflection of understandings about users’ needs and issues for designers. It has proven to work very well."
Who should come to the workshop?
"I would like all stakeholders in health care to be represented, and that involves legislative actors, researchers in ethics, doctors, nurses, patients and preferably technologically savvy people who can help explain technological interoperability."
Why did you choose to engage in Uppsala Health Summit?
"My guidning star in research is to contribute to innovation and change.The topic of the workshop that I am organising is a pain point for health care, and I really hope that the workshop will help us take one step towards better care."