Involving individuals with lived experience in research: A perspective from the Bipolar Disorder Research Network
Dr Katherine Gordon-Smith, Senior Research Fellow at the University of Worcester with the Bipolar Disorder Research Network (BDRN), discusses the mutual benefits of involving individuals with lived experience in research. One of these individuals, who champions the work of BDRN, is Julia Savage. Julia shares her personal experiences of bipolar disorder and taking part in the BDRN mood monitoring system True Colours.
Research into bipolar disorder
"Bipolar disorder is a common, severe psychiatric condition characterised by episodes of high (manic) and low (depressed) mood. The symptoms have an impact on all aspects of individuals’ lives, and this is complicated by the unpredictability of bipolar disorder which can vary greatly between individuals." Dr Gordon-Smith
Worcester’s Mood Disorders Research Group founded the Bipolar Disorder Research Network (BDRN) a collaboration of researchers, clinicians and research participants throughout the UK involved in investigating the underlying causes of bipolar disorder. BDRN has recruited the largest sample of individuals with bipolar disorder in the world (over 7000 participants).
BDRN Research Champions
"Our research champions are research participants who provide expert advice and input into our research programme. They are invaluable in publicising and supporting our research and helping to improve public awareness about bipolar disorder by contributing to public lectures, media interviews and documentaries. In recent years we have observed an increase in public awareness about bipolar disorder and individuals discussing their participation in research and lived experiences via various platforms has meant that accurate information about bipolar disorder and the importance of research is reaching an ever-wider variety of audiences."
Julia is one of our longstanding BDRN research champions. She has written several articles about participating in our research for both our BDRN newsletters and blogs for the charity Bipolar UK, which supports individuals with bipolar disorder and their families. We also ask Julia for her advice and feedback when we develop new research materials. Julia is also a great champion of True Colours our BDRN online mood-monitoring research tool where over 1000 individuals with bipolar disorder now answer on-line questions about their mood every week. We are extremely grateful to Julia for all her support since she first participated in our research over 15 years ago. Here, Julia talks about her own experiences of taking part in our True Colours research and the work she has done to increase awareness of bipolar disorder in her local area:
"I was first taken ill when aged eighteen, almost forty years ago, when psychiatric illness was rarely talked about openly. Treatment was limited to drugs and ECT (Electroconvulsive therapy). Thankfully, medical help and society has moved forward since that time. I believe that research plays a vital role to find further improved treatment and a wider understanding of bipolar disorder.
I first took part in the Bipolar Disorder Research Network (BDRN) research programme over 15 years ago and I have been taking part in their True Colours project for the past three years. For me, True Colours serves two purposes. Firstly, the data submitted is used by BDRN for research. Secondly, it acts as a useful tool for me to check the ups and downs of my mood by means of the graph, which is plotted on a weekly basis. I can see quite clearly, at a glance, when my mood alters. For example, I only have to see the graph peak by a small degree and I know immediately to take action to lower the mood back to a level that is acceptable to me. Although I have learnt to recognise my own triggers, a visual graph confirms change in the variation of my mood. This is a useful way of managing my bipolar disorder. It is also possible to pinpoint the peaks and troughs by the date the data is submitted. This means that I can cross-reference the date with events in my diary to try and analyse why the change may have occurred. Often it is due to a stressful period which may only be temporary.
I have taken my graphs to appointments with my GP and psychiatrist to illustrate the mood swings I have experienced at a certain period of time. I also give talks at the Heart of Worcestershire College about my experiences with True Colours Research to first-year students who are studying for a degree in Social Work. I show the students my own graphs and explain how the research is implemented and the ways in which it helps monitor my mood. "
Dr Gordon-Smith would like to thank all the BDRN research champions, who continue to play a vital role in research: “Without the ongoing support of all our research champions and participants our research simply would not be possible”.
Dr Katherine Gordon-Smith and other members of the Mood Disorders Research Group teach and supervise research projects about mental illness on many courses at the University of Worcester, including Psychology BSc (Hons), Midwifery BSc (Hons), Nursing BSc (Hons), Physician Associate MSc, and Paramedic Science (BSc Hons).
The research group supervise PhD degrees in Allied Health Studies and Psychology focused on aetiology and comorbidities of major mood disorders.