The “end-users” in our research are the patients with PD, their families and the health services, all of who will directly benefit from a positive study outcome. Patients/families are regularly updated on the progress of our research and are recruited for our studies via our website, popular and social media, and regular open meetings organized in collaboration with the Norwegian PD association. Together with our head of administration, Magnus Alvestad, our PD team ensures that the projects adhere to the Responsible Research and Innovation (RRI) framework laid down by the Research Council of Norway (as outlined by Stilgoe et al.) and have a major focus on inclusion and active user participation.
A user panel has been assembled comprising a representative of the PD patient association (Ellen Tove Lindblom), and convenes regularly with the following agenda: 1) Sharing of latest research findings and potential impacts; 2) Information on upcoming studies and call for participant recruitment; 3) User input on prioritization of research directions and ethics; 4) User-initiated research.
Standardized care pathway for PD diagnosis, follow-up and treatment
The project will develop a care pathway that will become active at first contact with the neurology department at Haukeland. It will be built on interviews with patient, family members, and representatives of all the different disciplines involved at the hospital.
The standard care pathway will be based on evidence, but with an opportunity to adjust for the clinical needs and preferences of individual patients. This approach will optimize healthcare for PD by ensuring every task is done efficiently, and without redundancy, and it will create better opportunities for networking and cooperation within and across healthcare institutions and other related assets including the industry.