By Emma Jennings
Translational research, with the goal of “translating” laboratory results into improved human healthcare, is fundamental for progression in the field of medical research. Often through multidisciplinary collaborations, translational research can result in improved diagnostic and prognostic patient care – with the operative word here being patients. Through my experience, albeit quite limited as a recent graduate, it seems that despite having these multidisciplinary teams, patient contact is restricted to healthcare professionals.
Working in a laboratory environment, it is often easy to lose sight of why research is being conducted; visualising a patient sample as just that – a sample. Whilst patient consent requires meticulous governance to ensure the patient fully understands the use of their samples and their rights regarding their participation, there is often a lack of understanding of why the research is being conducted through no fault of their own.
- What potential benefit could this research have on future patients?
- Who could be affected by this research?
- Why is the research being undertaken?
- And one in particular that I’d like to address – What is being done with their sample?
Whilst these questions are addressed in patient information packs in plain text and are discussed with the patient when taking consent, the gap between patients and the research conducted in the laboratory remains evident. Through working in a translational research environment where the samples are collected first-hand from the ward in which they are taken, patient interaction is often a key aspect of my job role as a research assistant. I understand that this type of research environment is quite an unusual circumstance, with most research taking place across academic institutions where patient interaction is often reduced, if present at all. I was quite surprised when starting this role that one of the main questions I am asked is:
“What are you going to do with it?”
As this question was continually asked, it became apparent that more needs to be done to keep patients informed of research progression. This is especially important if patients are serial donators, where regular interactions often take place among patients and healthcare professionals.
So, what can be done to help this situation? Many institutions run patient engagement nights, giving patients who are interested the chance to engage with academic researchers and ask any questions they may have. Whilst not all patients will be interested in attending events like this, giving those that are this opportunity would be just one way to overcome this hurdle. Simple schematic diagrams and interesting lay summaries should be produced to present to patients either upon consent or after, another way to give those patients who are interested the opportunity to learn how their contribution to research is paving the way for improved healthcare in the future – after all, the research would not be possible without their help.
Whilst this kind of continued information could be deemed as an increased workload, I believe it is of utmost importance that patients are given the opportunity to learn about the research they are involved in. These small actions could lead to increased patient recruitment into research and clinical trials, in addition to an enhanced working/learning environment for the healthcare professionals who are working closely with the patients – ultimately creating a more united multidisciplinary team. Finally, and in my opinion most importantly, these small actions would give academic researchers the opportunity to meet the patients, whom they are dedicating their lives to help, reminding them of the reason they are conducting the work they are undertaking and ultimately fuelling their motivation for successful advances in the field of translational science.
About the author:
Name: Emma Jennings
Job Title: Research Assistant
Since graduating from the University of Leeds with distinction in my MSc (Molecular Medicine), I have worked as a research assistant on an immunotherapeutic project for understanding the mechanisms of extracorporeal photopheresis for graft versus host disease. This role, based in a UK hospital, gave me the opportunity to interact with patients in a way that I hadn’t previously experienced whilst undertaking research projects in University environments. In addition to cementing my desire to seek a PhD in cancer immunotherapy, this position has created a secondary ambition – to bridge the gap between patients and researchers throughout my future career.