Putting the patient perspective at the heart of life sciences

In 1897, the Heufierberbund (Hay Fever Association) was formed in Germany, which is defined by many as the first of Europe's patient associations. Over time, the organizations have become more numerous, grown in size and taken on a key position in shaping the modern, knowledgeable patient. They also constitute valuable platforms for dialogue between patients, relatives, research and care - and at a time when patients more actively than ever seek information about their condition, the potential for continued developed collaboration increases.

“Physicians' ambitions and patients' preferences do not always match, and we must never underestimate the experience of actually living with a disease. Here, patient associations play an important role in conveying perspectives that generate increased benefit from research and care. And with the right tools, we can engage even more patients to contribute their insights, which will in turn optimise the relevance of our work to an even greater extent,” says Björn Wettermark, Professor of Pharmacoepidemiology.

Similar conclusions are drawn by the Swedish Agency for Health and Care Services Analysis, which in a 2024 report presents experiences from 500 patient-, region- and health care representatives. The investigators conclude that “patient participation has great potential to add value in a person-centered health and medical care system” but also that fully utilizing this requires “a common fundamental view on why patient participation is important”. To achieve this, a national platform is proposed that will contribute to effective and equal patient participation through education and information.

“In my work with focus on drug development and treatment in low- and middle-income countries, I often see the consequences of insufficient communication between research, clinic and patients. For example, developers of tuberculosis drugs generally strive for the shortest possible treatment, while most patients place far greater importance on avoiding side effects – a difference partly explained by the fact that patients often lack the tools to to make their voices heard. Corresponding challenges exist in Europe and Sweden, and it is our responsibility as professionals to provide what is needed for mutual exchange of knowledge and experiences,” says Elin Svensson, Professor of Pharmacometrics.

Uppsala University is today, via the Department of Pharmacy, a member of EUPATI. This European organisation was formed in 2012 to provide patients the knowledge to collaborate with other stakeholders in research and development. In 2021 a Swedish EUPATI platform was formed by The Swedish Disability Rights Federation, before being re-organised in early 2025 into the membership structure that today unites close to 50 organizations, authorities and companies in a shared mission to educate patient and user representatives in health economics, pharmaceutical development and medical devices.

“Through EUPATI, Uppsala University takes an active role to improve the conditions for both patients and their relatives to get involved in Swedish life sciences. I have personally enrolled in the design of the course Research and Development of Pharmaceuticals and Medical Devices, which was a highly valuable experience where I worked in close dialogue with representatives of patient associations – which once again reminded me of the importance to include the care recipients experience in our work,” states Elin Svensson.

The course is now included in the EUPATI Sweden educational plan, and in September the Swedish Inheritance Fund announced that it is granting support to EUPATI Sweden - A participating patient, a project that will enable more patients to take part in the course. Starting in 2026, EUPATI will launch targeted communication and information meetings to increase the awareness of the organization's courses and the important impact of patient involvement in Swedish care and research.

“The patient perspective is invaluable to optimise the relevance of our work, and also the main focus of our Faculty of Pharmacy Day on Wednesday 19 November. The fact that the Swedish Inheritance Fund is now giving EUPATI and the course we have designed its full support is of course incredibly inspiring and we look forward to the improved conditions for collaboration and dialogue with both patients and their relatives that this will enable,” says Elin Svensson.

text: Magnus Alsne, photo: Mikael Wallerstedt, Johan Alp