Advancing treatments and research through partnerships that empower

Members of the Edinburgh Branch of Parkinson’s UK are challenging the common cultural perspective that medical care is simply given to patients by doctors. Instead, they have found that promoting events and interactions between researchers, medical professionals and people with Parkinson’s disease has led to active partnerships that improve treatment, impact research and empower individuals. Building these new relationships and taking an active approach to one’s own wellbeing benefits everyone involved and enriches society as a whole.

What background and points are discussed?

Mr Bowler and his associates state early on in their commentary that becoming an active participant in one’s own wellness has many benefits but is not a straightforward journey. Learning to effectively communicate, building relationships, educating one’s self, taking on personal responsibility and getting involved with one’s community all help facilitate changing a person’s outlook from a passive recipient into an active participant. The authors point out that education plays an important role in enabling individuals with Parkinson’s disease to understand how the disease affects them, what medical research recommends, and how to manage symptoms and take care of themselves. The Edinburgh branch of Parkinson’s UK created the ERIG as a community of patients, researchers and medical professionals interested in learning about, sharing and discussing current Parkinson research. The group has grown to hold a regular program of events and lectures by renowned stem cell and regenerative medicine researchers. Members are also involved in reviewing grant applications as Lay Grant Reviewers and have prompted new avenues of research, such as the Parkinson’s odour project. Another important group for Edinburgh’s community of people with Parkinson’s is the QLG. Mr Bowler and colleagues state that this group aims to provide a safe environment where people with Parkinson’s can discuss living with the condition. These discussions allow individuals to normalise their perception of themselves within the community, become empowered, and then share their experiences with others. This cycle of communication, perception and empowerment greatly helps improve an individuals’ quality of life by encouraging them to openly discuss their needs. Key to both of these groups’ success has been the active effort of individuals to build relationships and trust by sharing information and life experiences. The authors specifically highlight the importance of how individuals communicate, particularly for building patient-doctor partnerships. The authors give several examples of how discussions between people with Parkinson’s, medical professionals and researchers can be turned into more meaningful and informative discussions by being genuine, believing in each other and doing his or her best to empathise.