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DZG Talk
How research is driven by experiential knowledge
Silke Lipinski is a member of the Trialogical Board (TZR) of the German Center for Mental Health (DZPG), Coordination Center for Patient and Public Involvement (PPI), Clinical Psychology of Social Interaction at the Institute of Psychology, Humboldt University of Berlin. Dr. Myriam Bea is managing director of adhs-deutschland.de and a TZR member.
In an interview, we discussed the benefits of participatory research and the differences and similarities of this approach in mental health and physical medicine.
In an interview, we discussed the benefits of participatory research and the differences and similarities of this approach in mental health and physical medicine.
Ms. Lipinski, Dr. Bea, you hold scientific positions at the DZPG, which was founded in 2023. You also have experience with mental illness yourself. Do you embody an idea of the DZPG?
Silke Lipinski
Exactly. The fundamental idea of participatory research is to combine different types of experience and knowledge. Both can be present in one person. This is a particular challenge in the field of psychological and psychiatric research, as there is still a great stigma attached to being open about one's own experiences.
Could you briefly explain your experience and expertise?
Dr. Myriam Bea
I have adult sons with an ADHD or autism diagnosis, so I am a relative.
Silke Lipinski
I come from the autism spectrum and am involved in the DZPG as an expert with experience in the field of psychiatry.
"The profound idea of participatory research is that you bring together different kinds of experience and knowledge."
What is the DZPG's understanding of patient involvement? What are the tasks in which patients are involved, and how does this work?
Silke Lipinski
I would like to correct that question. For one important reason: we have distanced ourselves from the term "patients". It is not an appropriate term in the field of mental health. After psychotherapeutic treatment, for example, you still have a life with a particular disposition or with an illness that may have improved but may not be gone. This does not automatically turn experienced people into "patients". It's often similar in the organic field.
Can you be more specific?
Silke Lipinski
Someone who had cancer ten years ago is also an experience expert, but not necessarily a patient anymore.
So, which term do you consider more appropriate?
Dr. Myriam Bea
We are people who have had a certain (crisis) experience. That's why we say experience experts. We have also chosen this term in our own committee in the DZPG, the Trialogical Board. It includes those affected as well as people close to them. It also balances out a possible power imbalance that may be inherent in the term patient.
So, it all starts with the language?
Dr. Myriam Bea
Yes, and it's similar to the term "next of kin." It's legally defined. But we are talking about relatives and close associates (RCAs), which includes all close persons, who must also be considered.
"Expertise gained from experience is very valuable. That's why we want to incorporate this knowledge into research."
What is behind the re-evaluation of experiential knowledge?
Silke Lipinski
The knowledge gained from experience is precious. That's why we want to incorporate this knowledge into research. It can improve the quality of research, steer it in the right direction, and lead to previously neglected topics being addressed.
What does the involvement of the experience experts look like?
Silke Lipinski
We have established two pillars of participation in the DZPG. One is participation at all committee levels, with voting rights. This differs from the advisory board structure we often see, where there is only the right to make recommendations.
Please tell us a little bit about the committees.
Dr. Myriam Bea
With pleasure! The Center for Patient and Public Involvement (PPI) supports the active participation of experience experts in decision-making bodies. At the six partner DZPG sites, designated speakers coordinate local participation, act as contacts for participatory research, and ensure the quality of the participatory elements of the DZPG projects. A cross-site consultant position supports the work of the Trialogical Board.
Can you outline the work of the Trialogical Board?
Dr. Myriam Bea
The Trialogical Board comprises a maximum of 36 people, including up to two representatives for those affected, relatives, and researchers per location. From the beginning, the board was involved in the DZPG's concept development and participates in infrastructures, research projects, and working groups.
What is the aim of the working groups?
Silke Lipinski
To facilitate and improve mental health access and care by making the mental health journey patient-centered, overcoming the stigma of mental illness, and encouraging the participation of experts with experience.
There are also local partner site boards. What is their function?
Silke Lipinski
Each DZPG partner site has a local board. The board meets regularly to promote the exchange between experience experts, relatives, and researchers. The PPI speakers prepare topics and organize meetings, projects, and other opportunities for participation on-site.
How can people interested in participating in board activities find you?
Dr. Myriam Bea
Anyone who wants to join us as an affected person or as an RCA can contact us. We have now decided that it makes sense if there are no more than 40 people in a local board - that would be a limiting factor for now.
"Participatory research means that the people who are the target group of the research should also be involved in the research projects."
You mentioned two pillars, the number one being board-level participation. And the second pillar?
Dr. Myriam Bea
The second pillar is participatory research. The research's target group should be involved in the projects from the planning phase through to evaluation and publication.
You mentioned participation in the publication process, can you be more specific?
Silke Lipinski
Research results should also be published in formats that can be used by the intended audience, including self-help, and not just in scientific publications.
Can you give a specific example of the benefits of participation?
Dr. Myriam Bea
Together with a scientist, we have recently been questioning the design of a study. She was wondering if and how people with a sleep disorder who could not come to the clinic could be included in the study, for example through home visits or patient transportation. We discussed this at length and provided a lot of input. The study design was adapted and is now more feasible.
Does that help to make the research less theoretical?
Dr. Myriam Bea
Exactly. This is due to the mechanism that experience experts are not only consulted but also have a guaranteed right to participate on an equal footing.
"Stigma is a serious problem that is much greater in psychiatry than in physical illnesses."
Is it a significant paradigm shift to include people who have been stigmatized in the past, especially those with mental illness?
Silke Lipinski
Yes. Because stigma is a huge problem, much more prominent in psychiatry than in physical illness.
Let's stick with the idea of comparing a mental illness with a physical disease. Is there an essential difference?
Silke Lipinski
Yes, indeed. For example, take lung diseases: In this case, the goal of the affected, and therefore the goal of the researcher, should be clear: they want the disease to disappear. With mental illnesses, this is not always so clear. Neurodiversity, for instance, can be closely linked to one's personality and can be a source of creativity. The question of treatment is much more complicated, and research into treatment must take this into account.
In what form is the knowledge of an experience expert contributed?
Silke Lipinski
I must make a distinction: We are not a pool of test subjects or a self-help group. This activity is about contributing experiential expertise. Just one example: The reasons why effective drugs are often not taken by affected persons have not been sufficiently researched. The unique experience of what people say about side effects and other reasons for not taking their medications is essential for research to learn about such problems and take new directions.
It can be a challenge to manage daily life with a mental illness. How does that fit in with this additional volunteer work?
Dr. Myriam Bea
Well, this is also the case with physical illnesses, which can cause different stress levels depending on the acute condition. The individual capacity towards participation arises with all voluntary work: Who has the time, resources, and constitution to do it? Mental crisis and motivation are only two factors. We managed to get everyone involved to recognize social selection as a problem. The first step is to pay an ongoing allowance. We want to lose as little expertise as possible.
Can experience and expertise be brought to the field of child and adolescent psychiatry in this way, too?
Dr. Myriam Bea
Yes. For example, the DZPG partner site in Bochum-Marburg has made great efforts in this area. They also have a youth council. At the most recent congress for psychotherapy, there was an extensive panel discussion with young people.
Would you like to share a project from your work?
Silke Lipinski
We just conducted an online survey, the KOMMIT study. This is an example of so-called user-initiated and user-driven research. In this case, the Trialogical Board decided to ask not only within its own ranks but also throughout Germany: "What topics should research address, and where do affected people and their families see deficiencies?" The answers to these questions will result in the Mental Health Research Compass.
"The fact that people still rate a well-covered research area as unexplored means that this knowledge has not yet reached the general public."
Has there already been any feedback?
Silke Lipinski
Yes, and we have already learned a lot. People are actually contributing new research questions, as well as ones that have been researched for a long time. This is a very important indicator for us. The fact that people rate a well-researched topic as still unexplored means that this knowledge has not yet reached the population. We were able to identify communicative tasks.
Dr. Bea, and Ms. Lipinski, thank you very much for the interview.
Helga Rohra, Co-Chair of the DZNE Patient Advisory Board
Learn more
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Clinical Trials
Clinical trials are essential in medical research to prevent, detect, and treat diseases more effectively. Patients who participate in a clinical trial make a valuable contribution to health research, have access to new treatments, and receive intensive care.
Patient Participation
Health research is undergoing a shift in thinking: There is a growing recognition that everyone benefits when patients are actively involved in the research process. The DZG offers various opportunities for this.
