Interview with The Swedish Kidney Association
Sara Norman is Director of Operations at the Swedish Kidney Association. In this interview, Sara explains how the Federation views research into new treatments and clinical trials, among other things.
Hi Sara! What challenges do you see regarding new treatments in healthcare?
– I can give an example. There is currently a new treatment being researched that will help patients whose own antibodies easily reject foreign organs to still manage a transplant. The NT Council (Council for New Therapies) has recommended that regions use this treatment. Yet the treatment is not available because the region does not know who will pay. Unfortunately, I have seen this before, that research comes up with new, fantastic possibilities for patients, but then the regions are left with their budget and do not know where the money will come from.
How can this be changed?
– One problem is information, that not enough people in healthcare know about the new treatments. At the Kidney Association, we keep a good eye on the surrounding world and can see when the regulatory authorities bring up treatments for recommendation and give their approval. But doctors are not always reached by this information, sometimes patients are better informed than they are. Procurement rules can also hamper the introduction of good medical technology into healthcare. Pressured by finances, healthcare providers make poor procurement decisions that can pose safety risks. Similarly, procurement rules can hamper new and effective solutions because of a lack of expertise or because the rules make it impossible. So more than information, some regulations and procurement practices may also need to be modernised.
Clinical trials are needed for the development of new medical technologies, how do you view these?
– My understanding is that the attitude to participate in clinical trials is very good. Then there is the challenge of inviting patients to participate. The Kidney Association has 4,000 members. In total, about 4,000 people in Sweden receive dialysis and more than 6,000 have a transplanted kidney. These people don’t always want to think of themselves as kidney patients, but they would benefit personally from kidney research and new methods. But in our association, there are many who are driven by the possibility to feel better and members are super interested in ongoing research and research results.
How do you see your involvement in MedTechLab’s Patient Council?
– We want to contribute to the dialogue between patients and research, which is one of the reasons for the Patient Council. Then we can inform our members about the research through our channels. If there is ongoing research that concerns our members, they want to hear about it. It doesn’t have to be about finalized results, but everything that is going on and concerns them is of interest.
Read more about the Kidney Association on their website