Participatory structures and procedures foster empowerment, a resource oriented, rights based, equal and inclusive approach to mental healthcare and research and thus allows innovative approaches to tackle future challenges in mental health.
MH-TRN Dr. Candelaria Mahlke’s research group conducts all research projects participatory or in co-production with researchers with lived experience, service users, and carers and supports involvement into research on different levels: In collaboration with users and carers a research training module for EX-IN was developed for peers and training for scientific staff to conduct research from a participatory perspective. The project EmPeeRie – Empower Peers in Research, initiated by Prof. Dr. Thomas Bock, Prof. Dr. Jürgen Gallinat, and Elena Demke (M.A. historian and peer) provided financial and scientific support for user controlled research projects. Within this initiative the UKE was the first in Germany to establish a scientific participatory advisory board in 2015 (EmPeeRie NoW) consisting of service users, peer support workers, and carers, led by Dr. Candelaria Mahlke and Dr. Imke Heuer. EmPeeRie NoW is consulted by many emerging research initiatives (e.g., new DFG collaborative research initiatives) and provides advice for research proposal applications and project delivery with a special emphasis on user-orientation and de-stigmatisation.
EmPeeRie NoW is explicitly involved in the MH-TRN.
In general, UKE was centrally involved in and shaped
the S-3 national guidelines for psychosocial therapies
for SMI, the treatment of psychotic disorders, including participatory approaches (Trialogue, peer support, EX-IN). As a consequence of these and many other efforts, peers were officially recognized as a professional group by the Federal Joint Committee (G-BA).
The project EmPeeRie, initiated by Prof. Dr. Thomas Bock, Prof. Dr. Jürgen Gallinat, Dr. Candelaria Mahlke and Elena Demke (M.A. historian and peer) financially and scientifically supports peer research projects, offers
Definition of terms. The term ‘participation’ refers to including/ involving individuals with lived experience of mental health crisis in research, decisions on different levels (e.g. organizational), treatment (e.g. as peer supporting others; in decisions concerning therapeutic approaches), and other areas.
Participation is hence an important aspect of ‘empowerment’, which in turn refers to the level of choice, influence and control that users have and experience in (mental) health services.
Definition of terms. The term ‘peer’ is usually used to refer to an individual who shares the experience of living with mental health conditions.
Peer training refers to a protocol/ curriculum that has been developed to empower peers to assist others who experience mental health crisis (including as a carer/ relative, etc.).
Peer support refers to involving peers to support others who experience mental health crisis in a process of encouragement, support,communication, sharingof skills and knowledge,etc.to promote recovery and empowerment.
Involving individuals with lived experience also as advisors (for research; scientific advisory board EmPeeRie NoW) and as peer- researchers, leading their own projects has a unique history at the UKE. The perspective of individuals with lived experience are considered crucial in conducting meaningful research with less stigma, broader impact and acceptance.