Involving individuals with lived experience in research: A perspective from the Bipolar Disorder Research Network


Dr 凯瑟琳·戈登·史密斯, Senior Research Fellow at the U2电竞体育平台 with the 双相情感障碍研究网络, 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. 这些症状会影响个人生活的方方面面, and this is complicated by the unpredictability of bipolar disorder which can vary greatly between individuals.”戈登·史密斯博士

The Mood Disorders Research Group standing outside at the University. All of the group members are smiling
U2电竞体育平台情绪障碍研究小组

 伍斯特情绪障碍研究小组 founded the 双相情感障碍研究网络 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研究冠军

"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."

 

真正的颜色标识

 

 

 

茱莉亚是U2电竞体育长期以来的BDRN研究冠军之一. 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. 在这里,茱莉亚讲述了她自己参与U2电竞体育的经历 True Colours research and the work she has done to increase awareness of bipolar disorder in her local area:

Julie Savage
Julia Savage, BDRN research champion

 

“我18岁时第一次生病, 大约四十年前, 那时精神疾病很少被公开谈论.  治疗仅限于药物和ECT (电休克疗法).  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 双相情感障碍研究网络 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 有两个目的.  首先,提交的数据被BDRN用于研究.  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.  我可以很清楚地看到,在我的情绪变化,一眼.  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.  尽管我已经学会了识别自己的触发点, 一个可视化的图表证实了我情绪变化的变化.  这是一种有效的管理我的双相情感障碍的方法.  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 to analyse why the change may have occurred.  这通常是由于一段可能只是暂时的紧张时期.

The BDRN logo

 

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. " 

确认

戈登-史密斯博士想要感谢所有BDRN研究的冠军, 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 凯瑟琳·戈登·史密斯 and other members of the Mood Disorders Research Group teach and supervise research projects about mental illness on many courses at the U2电竞体育平台, including 心理学学士学位(荣誉)助产学学士学位(荣誉)护理学士学位(荣誉)医师助理MSc, and Paramedic Science (BSc Hons)

The research group supervise 博士学位 盟军的健康研究 and Psychology 重点研究主要情绪障碍的病因和合并症.

All views expressed in this blog are the Academic’s own and do not represent the views, policies or opinions of the U2电竞体育平台 or any of its partners.