Peninsula Public Involvement Group (PenPIG) member, Malcolm, has recently embarked on a journey to become a Cochrane Citizen Scientist. According to Cochrane, ‘Citizen Scientists’ play an important role in the research community and ‘help identify the evidence needed to make informed healthcare decisions.’ For Malcolm, becoming a ‘Citizen Scientist’ was an obvious choice due to his experience and background.
Throughout his lifetime, like many of us, Malcolm has witnessed his friends and family endure multiple health complications. His experiences sparked an interest in medical research, and he soon found himself on various boards and groups; from leading health walks for his local community to being a member of PenCLAHRC’s PenPIG group, as their remit corresponded with Malcolm’s “interest of trying to do something about it [improving patient healthcare]”.
As a PenPIG member, Malcolm works with researchers to make sure their work is relevant and accessible to all audiences:
“We try and bring a public perspective to research by looking at the language used, for example we will ask questions such as ‘is this practical?’ and ‘will this benefit the wider community?’”
Malcolm’s first involvement with PenCLAHRC was a ‘Making Sense of Evidence’ workshop, which are frequently run and designed to teach patients, clinicians, NHS staff and applied health researchers how to find and use evidence to make effective health and social care decisions. From this, he was asked by a member of PenCLAHRC’s Patient Public and Involvement (PPI) Group to join the PenPIG team.
Since being part of the team Malcolm has worked on a myriad of projects ranging from DECODE, which aims to test a clinical decision support system to aid dementia diagnostic pathways, and INTERPRESS, which investigates the link between inter-arm differences in blood pressure (IAD) and the risk of mortality. Malcolm worked directly with researchers to ensure plain English language was used for websites, participant and collaborator letters and protocol documents, and generally ensured that a patient perspective is at the forefront of researchers’ minds from inception to completion.
The environment that Malcom and the team undertake these projects in is supportive as “people are very interested and involved to see how our patient group progresses, as they too have the same ethics and beliefs about getting the public involved in research and care. There is sort of an equal partnership philosophy running through the organisation which makes me really pleased and happy to be working with them.”
Looking to the future, Malcolm is now completing training to become a Cochrane Citizen Scientist. The Cochrane Network is highly regarded in the medical research sector, and it is perhaps because they dedicate time and effort to programmes and people such as Cochrane Science Citizens. The Cochrane’s Citizen Scientist platform allows people, just like Malcolm, to make a real difference in medical research and care of patients.
If you are interested in finding out more about the PPI, PenPIG or Cochrane Science feel free to contact the PPI team.