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

Dr 凯瑟琳·戈登·史密斯, Senior 研究 Fellow at the 新黄金城集团 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 而且 taking part in the BDRN mood monitoring system 真实的颜色.


“双相情感障碍很常见, severe psychiatric condition characterised by episodes of high (manic) 而且 low (depressed) mood. 症状对个人生活的各个方面都有影响, this is complicated by the unpredictability of bipolar disorder which can vary greatly between individuals.“戈登·史密斯医生

The 情绪障碍研究小组 st而且ing outside at the University. 所有的小组成员都在微笑

 伍斯特情绪障碍研究小组 建立了 双相情感障碍研究网络 研究人员的合作, clinicians 而且 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). 


"Our research champions are research participants who provide expert advice 而且 input into our research programme. They are invaluable in publicising 而且 supporting our research 而且 helping to improve public awareness about bipolar disorder by contributing to public lectures, 媒体采访及纪录片. In recent years we have observed an increase in public awareness about bipolar disorder 而且 individuals discussing their participation in research 而且 lived experiences via various platforms has meant that accurate information about bipolar disorder 而且 the importance of research is reaching an ever-wider variety of audiences."






茱莉亚是新黄金城集团BDRN长期以来的研究冠军之一. She has written several articles about participating in our research for both our BDRN newsletters 而且 blogs for the charity 英国双相, which supports individuals with bipolar disorder 而且 their families. We also ask Julia for her advice 而且 feedback when we develop new research materials. 茱莉亚也是 真实的颜色 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,Julia讲述了她自己参加新黄金城集团的经历 真实的颜色 research 而且 the work she has done to increase awareness of bipolar disorder in her local area:



“我十八岁时第一次生病, 大约四十年前, 那时人们很少公开谈论精神疾病.  治疗仅限于药物和电痉挛疗法(电休克疗法).  Thankfully, medical help 而且 society has moved forward since that time.  I believe that research plays a vital role to find further improved treatment 而且 a wider underst而且ing 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 而且 I have been taking part in their 真实的颜色 过去三年的项目.  对我来说, 真实的颜色 有两个目的.  首先,提交的数据被BDRN用于研究.  其次, it acts as a useful tool for me to check the ups 而且 downs of my mood by means of the graph, 这是以周为单位的.  当我的情绪发生变化时,我一眼就能看得很清楚.  例如, I only have to see the graph peak by a small degree 而且 I know immediately to take action to lower the mood back to a level that is acceptable to me.  不过我已经学会识别自己的诱因了, 一个可视化图表证实了我情绪变化的变化.  这是我治疗双相情感障碍的有效方法.  It is also possible to pinpoint the peaks 而且 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.  这通常是由于一段压力时期,可能只是暂时的.



I have taken my graphs to appointments with my GP 而且 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 真实的颜色 研究 to first-year students who are studying for a degree in Social Work.  I show the students my own graphs 而且 explain how the research is implemented 而且 the ways in which it helps monitor my mood. " 


戈登-史密斯博士要感谢所有BDRN的研究冠军, who continue to play a vital role in research: “Without the ongoing support of all our research champions 而且 participants our research simply would not be possible”.

 Dr 凯瑟琳·戈登·史密斯 而且 other members of the 情绪障碍研究小组 teach 而且 supervise research projects about mental illness on many courses at the 新黄金城集团, 包括 心理学(荣誉)理学士助产学(荣誉)理学士学位护理学(荣誉)理学士医师副学士学位护理科学(荣誉理学士)

课题组监督 博士学位 联合健康研究 而且 心理学 重点关注主要情绪障碍的病因和共病.

All views expressed in this blog are the Academic’s own 而且 do not represent the views, policies or opinions of the 新黄金城集团 or any of its partners.