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Case study: Retired Greater Manchester research manager 'privileged' to take part in cancer trial

A retired research manager who is battling cancer says it is “an honour and a privilege” to be involved in a clinical research study.

Jan Cashen (centre, in the above photo) was asked by her consultant if she would like to participate in the study following her diagnosis with Multiple Myeloma – a type of bone marrow cancer.

She has since agreed to become part of the National Institute for Health Research’ Patient Research Ambassador Initiative (PRAI) to help promote health research from a patient point of view.

For Jan, the decisions to take part in the study and become a PRA were easy. Before taking ill, Jan worked as a Research Delivery Manager with the Clinical Research Network, Greater Manchester.

Working with research departments across the region, Jan oversaw the delivery of a portfolio of studies in a variety of disease areas and knows first-hand how tens of thousands of Greater Manchester patients benefit every year from taking part.

Jan was diagnosed with Multiple Myeloma in the Emergency Department (ED) at Manchester Royal Infirmary in summer 2017.

She said: “I had attended the ED on advice from a walk in centre who thought I may have a kidney infection. On diagnosis, I had multiple fractures and was admitted to hospital.”

The following day Jan met Dr Alberto Rocci who leads a clinical trials team in the haematology department of the hospital, which is part of Manchester University NHS Foundation Trust.

Jan said: “The initial discussion was about my clinical care. For me, I wanted to start treatment as soon as possible. However, I can appreciate after receiving such devastating news some may want time to reflect and not commence treatment so quickly. We are all different. 

“Within the coming days, Dr Rocci mentioned his study and asked if I would like to participate. Again, for me, this was something I wanted to do at once.

“Research saves lives and improves quality of life. Maybe it was a selfish reason, or maybe I want to help others. Whatever the reason, taking part in research was a must. It is an honour and a privilege.”

Jan consented to take part in the study which is on the NIHR Clinical Research Network (CRN) portfolio, supported locally by CRN Greater Manchester.

Jan has had a positive experience and would encourage others to consider participating in research, no matter what their condition.

She said: “Actually taking part in the study was fine. I soon realised the study team was also my clinical care team and by participating I was receiving an additional layer of care.

“Study visits were linked to hospital appointments. There was no inconvenience but what I did receive was additional time with the team. It is like having a comfort blanket.”

The study Jan participated in aims to explore the markers of frailty in Multiple Myeloma patients, and monitor changes to those markers throughout treatment and follow-up. Clinical, physical and biological measures are collected by interviewing patients via questionnaires, physical tests and blood tests.

Dr Alberto Rocci, Consultant Haematologist at Manchester Royal Infirmary and Chief Investigator for the study, said: “Research is making a difference to lives every single day and that’s thanks to patients like Jan who are willing to take part in studies.

“The high level of engagement and positive feedback we receive from patients when we propose the idea of taking part in a study or a clinical trial is what really drives us.

“Jan’s passion for promoting the value of research from her unique perspective as both a patient and a respected figure in the Clinical Research Network is invaluable.”