Patients go home and look for answers
It's important that patients are actively involved in major decisions concerning their treatment. In practice, however, involving patients is easier said than done. "Imagine going to hospital and being told that you have breast cancer," says Renske de Bruine, Winq's co-founder and CEO. "You're already really nervous when you arrive, because you've had various scans and blood tests. Then you get the bad news. Right afterwards, your oncologist tells you about the various treatment options, their pros and cons, and what happens next. You barely have time to think before your appointment is over. Small wonder if, by the time you get home, you've forgotten most of what you heard."
Because a consultation offers so little opportunity to consider what's being said, many patients go on line afterwards looking for answers to the questions they didn't think to ask. And that can lead to decisions being made on the basis of generic information, which may not even be up to date. Patients easily become disoriented and ultimately go along with the follow-up suggested by the doctor. "That's all very well, but your doctor can never know what defines quality of life for you. One person won't mind that a treatment makes their hair fall out, but another person may find it very distressing," Renske points out. Doctors have little time to get to know their patients and answer all their questions, and patients aren't really involved in the decision-making process.
Winq takes up the challenge!
Decision-support tools make it possible to inform patients better. However, they are sometimes quickly overtaken by new research findings and developments, rendering them obsolete. A further problem is that individual care organisations frequently develop their own tools, resulting in the use of multiple tools for the same condition. And organisations don't tend to share their tools, due to concerns about incompatible content or quality control.
To address those problems, Renske, Lukas and their team have developed a suite of products. First, there's the Winq Designer: a resource that care organisations can use to create their own decision-support tools. That's supported by the on-line National Decision-Support Tool Library and the Winq Interface, which enables care organisations to link their decision-support tools to electronic medical records.
"The Winq suite provides the patient and the care provider with complete, personalised and up-to-date information about a diagnosis when they need it," explains Renske. To reduce the risk of multiple organisations each developing their own decision-support tool for the same condition, Winq came up with the idea of the National Decision-Support Tool Library. The aim is to provide care institutions with a comprehensive overview of available tools, including tools developed by other suppliers, together with information about their quality. As Renske points out, "That means care institutions don't have to keep reinventing the wheel -- they can draw on the work that others have done before them." The library also enables doctors to look at supporting information linked to each decision-support tool, such as medical guidelines and the academic articles and patients' associations consulted by the developers. "It's very like a physical library, with lots of books by different authors available to read," says Renske. Winq has set up a non-profit foundation to run the library, in the hope of encouraging people to share decision-support tools on a non-commercial basis. "The National Decision-Support Tool Library will act as a central information repository, hopefully lowering the threshold to the use of the best tools by care institutions," Renske continues.
Winq's third product is an interface with the electronic medical record system. The interface makes it easier to give patients access to decision-support tools, and to record their decisions in their records.
SIDN's mission is connecting people and organisations to promote safe and convenient digital living. Set up in 2014, SIDN Fund exists to support that goal. The foundation works to build a better internet for everyone by providing grants to projects that help to make the internet stronger, promote user empowerment or utilise the internet in innovative ways. By doing so, it contributes to the prosperity and wellbeing of the nation.
Support from SIDN Fund
SIDN Fund has done a great deal to help Renske and her team take forward development of the National Decision-Support Tool Library. "The Fund has been a big factor in enabling us to translate our idea for an on-line repository into the first working version of the library," she says. "Their support has made a real difference in terms of making things happen."
Renske is clear about the ultimate aim: to get the health ministry, the National Health Care Institute, the medical specialists' professional body and the umbrella group for patients' associations in the Netherlands to embrace the concept and start using it. "We hope that the National Decision-Support Tool Library will take us a step closer to that goal and help us show people that good decision-support tools are vital for joint decision-making. We're also hoping that the National Health Care Institute will set up a quality approval scheme for decision-support tools." If that happens, it'll be possible to assess the quality of a decision-support tool, assuring enhanced information provision to patients.
Want to know more about Winq and its on-line library? Visit winq.online.