I am not a medic, nor an academic. For over 34 years, I observed and lived with someone who was constantly taking medication as he had had a transplant, then for around 20 years his health gradually changed, more conditions developed, and the number and levels of medication were a daily matter of existence. For around seven years I became a regular attendee at hospital visits, meeting consultants and learning about changes to his health, the consequences of these and the potential for enabling a good quality of life to continue. So, gradually my interest in the respective roles of patient, carer and medical practitioner grew.

Oliva Grant, Patient and Public Involvement and Engegement Lay Co-Theme Lead

“At the heart of it all, I think, RESPECT is fundamental.”

The one thing I observed was the need for listening, of all of us. My husband was the person needing the medial support but in later years I needed to be part of discussions and to understand, so that I could support him.

At the heart of it all, I think, RESPECT is fundamental. Patients know themselves and their circumstances best, academic understanding may lie with medics but each needs to listen to and consult with one another. It is not a one-way street.

During those years I did not know there was such a thing as PPIE. Learning about that came several years after his death.

In the early months of 2020, when alone at home in lockdown I was slightly ‘at a loose end’ and was approached by a senior medic at Newcastle who had spotted and cut out several cancers from my husband. He told me about the potential for joining, as a lay person, a bid for funding into the potential role for Artificial Intelligence in aiding the diagnosis of medication for people with multiple conditions. I am fascinated by the potential for AI (for good and ill) and multiple medications had been part of my life for years. So, I said yes.

There was though one condition from me to be part of this research. That the role of PPIE must be at the heart of the dialogue, researchers are not just doing this fascinating research for themselves, it has purpose. At the heart research is FOR patients, therefore patients must be integral to, listened to and heard. For that to work the researchers must be enabled to speak directly with patients, so training and enabling researchers to get this skill and ability to listen is a fundamental part of the work of PPIE. It is about being respectfully and mutually informed.

So, I would urge researchers to take up every opportunity to listen, meet and ‘hear’ what is said by PPIE members. Use lateral thought as well as deep interrogation type thinking and try to hear effectively is being said. People you are meeting are those for whom this research is directed. Essentially listen and learn, this is true both for PPIE members and researchers.