Shared Expertise: Co-Production with the Swedish User Movement

A few brief questions about UserInvolve for Conny Allaskog, chair of NSPH! 

How did NSPH become involved in UserInvolve? 

NSPH, together with the organization Hjärnkoll, has collaborated with CEPI's research network for many years. Several of the initiatives carried out within the framework of NSPH have been evaluated by CEPI. Through UserInvolve, we wanted to take a more comprehensive approach to user involvement and therefore planned the research program, its content, and the application together with the researchers. 

What kind of organization is NSPH?
 
NSPH is a collaborative organization for patient, user, and family organizations in the field of mental health, addiction, and suicidality. We have 14 member organizations, which in turn have approximately 70,000 members from all over Sweden. We work to develop, disseminate, and implement methods for service user involvement, examples of such methods are user-focused monitoring and patient forums, methods that in themselves bring us into contact with a large number of service users, patients, and family carers within psychiatry and social psychiatry in Sweden. 
Why is UserInvolve important? 
Through UserInvolve, NSPH gains unique knowledge and the opportunity to learn more in an area that is crucial to us, such as user involvement. In return, researchers gain access to the entire NSPH family and all the knowledge we have. 

What have you appreciated about UserInvolve? 

Co-producing together with all the researchers, people with lived experience, the health care profession, and together learning more about user involvement. And of course, I think it will be exciting to follow the results of the RCT study on peer support. 

What is the key challenge for NSPH in participating in UserInvolve? 

One challenge, which is also a strength, is the NSPH's organization. For example, there are also regional NSPH organizations around Sweden. These regional NSPHs often have broader cooperation agreements with their regions and municipalities and work with the issues in a practical way. In order to ensure that the right knowledge is communicated in the right context in this large and complex research program, we realized that dedicated resources were needed for coordination. It was important that we received the budget from the research program to hire someone here at NSPH to handle this coordination. 

Who do you think will benefit from the results of UserInvolve's various research projects? 

I think everyone will benefit from UserInvolve, from health care professionals who want to work more with issues relating to user involvement, to the user movement, which will gain greater knowledge in this area, to decision-makers, who will be able to make well-informed decisions thanks to their increased knowledge.