Clinical research: patients and the public have their say

The aim of the SNSF's Investigator Initiated Clinical Trials (IICT) programme is to answer medical questions that are important to society but not a priority for industry. This year, representatives of patients and the public were involved in the evaluation process for the first time. "We promote patient-oriented research and are the initiator of the SCTO, the national platform for cooperation in this field, with whom we work closely," says Deborah Studer, head of the IICT programme. "Involving patients, who are the primary stakeholders, in the selection of funded projects is a logical step forward."

Following a call for participation posting at the end of 2020, the SNSF selected four representatives with extensive experience in patient advocacy and dialogue between society and research:

• Larisa Aragon Castro, 48, vice president of the Project Management Institute Switzerland, executive board member of EUPATI (European Patients’ Academy on Therapeutic Innovation) Switzerland
• Chantal Britt, 52, communications officer at Swiss 3R Competence Centre, founder and president of the Long Covid Switzerland association
• David Haerry, 60, secretary general of SAFE-ID (Swiss Academic Foundation for Education in Infectious Diseases), founder and president of Positive Council Switzerland (advocacy organisation for people living with HIV)
• Olivier Menzel, 46, head of strategic partnerships at Health 2030 Genome Center, founder and president of the BLACKSWAN Foundation (foundation for research on orphan diseases)

Expert patients

The role of these four representatives in the international evaluation panel, alongside clinicians and biostatisticians, is to determine whether the submitted projects appropriately address the needs of patients. "Too often, patients are still considered as objects. We give them a voice and a vote," says Larisa Aragon Castro. David Haerry agrees: "The priorities of scientists sometimes differ from those of the public and patients. Therefore, the patients play an important role in ensuring the relevance of research. In general, the scientifically excellent projects were also very good in terms of patient involvement."

Experience from other countries shows that patient and public involvement improves the quality and relevance of studies. This pilot project, which the SNSF hopes will help Switzerland to catch up internationally and promote dialogue between science and society, has been a real success. "The views of the four representatives were a perfect complement to those of the clinicians and biostatisticians," says Matthias Peter, president of the Biology and Medicine division of the SNSF Research Council, who led the evaluation meetings. "I was impressed with their knowledge of current research around the world and their level of preparation." The positive response comes as no surprise to Olivier Menzel: "Patients are increasingly involved and become experts on their own disease, especially in the field of rare diseases. It fascinates me to see the ideas they have and the initiatives they put together."

A pilot worth repeating

Another benefit of patient and public involvement is that it encourages more volunteers to participate in studies, increasing the likelihood of success. "Patient organisations have excellent networks and can contribute to recruitment," says Peter. "They also play an important role in communicating research results directly to the people concerned."

"Collaboration between patients and researchers should not be seen as a hassle, but rather as an investment," says Chantal Britt. "It ensures that public money is used wisely and that research meets real needs." Based on the success of this pilot, the SNSF will continue the collaboration with the four representatives in the IICT programme. In addition, it will evaluate the possibility of extending public participation to other SNSF funding schemes.