Co-researchers contribute socially useful knowledge to research

In countries like Canada, the United States, Australia and the United Kingdom, involving co-researchers or research partners in research projects has become increasingly common. In recent years, it has also grown more common in Sweden. Bergholtz feels that if researchers receive funding for research in health and medicine, it ought to lead to better health in the community. It is therefore important for the general public to feel that they can trust the research, that the research is transparent. She adds that there is a lot of substandard research, not least since AI came into the picture.

She brings up the Declaration of Helsinki, which is a set of fundamental ethical principles for medical research involving humans. An update of the declaration was adopted in 2024. In the latest version of the document, the word subject was replaced by the word participant, shifting from the outmoded term research subjects to research participants. A paragraph on the involvement of potential participants, including during ongoing research, was also added.

There is also pressure from research funders, especially at the European level, who want patients to be involved as early as in the application process and in helping to formulate research questions together with researchers, Bergholtz explains.
“Usually, you identify research questions first and look at what research already exists. Once you have planned a study, patients can provide insights that make the research even more useful for users. During the analysis and writing phases, the need for patient involvement varies depending on the nature of the study, but when it comes to communicating results, research is disseminated much more widely if the patient is involved,” she continues, and emphasises that co-researchers can also help with the recruitment of new participants in research studies.

She is also convinced that if patient representatives are properly trained, they can be helpful in debating issues and questioning interpretations, for example in online communities. These ideas are in line with what she believes is essential in the event of a crisis. It is a matter of creating partnerships and structures, processes that lead to us being prepared as a society.
“If we have established structures and involve, for example, stroke patients in research, then researchers can communicate directly with patient organisations about a new virus. Stroke patients and the patient organisation can then spread the information to those who need it.”

Bergholtz points out that there are administrative obstacles, such as how long the co-researchers can be involved and how they will be compensated financially. Time is another issue. The GPCC has overcome some of these obstacles by providing clear guidelines and procedures on remuneration and insurance. It has also developed a form to describe assignments to help researchers involve co-researchers. What practical matters to be considered, for example?
“It is also difficult to find patient representatives who are sufficiently trained and can speak on behalf of a whole group, not just about their own problems. They need to be able to communicate other people’s problems to the researchers,” she says.

Bergholtz herself suffered a brain haemorrhage in January 2017 and now works at the University of Gothenburg as a researcher and patient advocate.
“I help researchers define roles and I help patient representatives when they have questions about things like procedures. Whether the involvement of co-researchers becomes more common in the future depends on politics. If the world focuses on democracy, then it will become more common.”