Blog - Public involvement in the ACRC
In our latest blog, we sought insight into what it's like to be one of our Patient and Public Involvement (PPI) Network members.
It was about half-way through pandemic stricken 2021 that I clicked on certain options on the Voice website to say that I would like to register to join the ACRC Public Involvement Network. As a long-term and not so young(!) physical health patient with a strong interest in data science and the safe and efficient use of patient data in research, I was attracted to the idea of being involved in any way I could with their multi-disciplinary research programme which combines research across fields including medicine, engineering, informatics, data and social sciences. Jenny Robertson, the super friendly and intelligent Patient and Patient and Public Involvement and Engagement Coordinator for the ACRC then sent me details of how to apply and within a couple of weeks, I was in.
My first point of involvement was an online workshop to discuss the ACRC’s research project ‘Understanding Transitions in Care’ which sought to consult us on the design and content of the information sheet and consent form which would be shared with people who would expressed an interest to participate in this research. I was deeply impressed, both by the open and straightforward manner in which the views of myself and my fellow public and patient attendees were taken into account, and on the depth and breadth of wisdom and grounded common sense everyone contributed. Our contributions were swiftly acted upon and within a couple of weeks we received the correspondingly amended version of the documents. Our impact was plain to see.
More recently, I was able to provide feedback on some materials for the ACRC’s contribution to the Edinburgh Science Festival. The length of Jenny’s email in response to my constructive criticism is testimony to the extent to which my thoughts were was given due consideration. I am very happy to report that my consistent experience of being involved with the ACRC is that input from a patient and public perspective is definitely wanted, taken seriously and acted upon.
It was very exciting to attend the online launch of the ACRC in November – I learned so much from the brilliant presentations, but a small part of me did wish that I was physically there in Edinburgh. Having said that, the virtual working has been adaptive and accessible and I would readily recommend anyone with an interest in supporting research into older life care to join us.
Sarah Markham
PPI Network Member
If you would like to read more about our Public Involvement Network, you can do so here: https://www.ed.ac.uk/usher/advanced-care-research-centre/get-involved/ppi