Sitting down to write any blog can be difficult, this blog on honesty, in the area of research, was quite daunting, not knowing who exactly my audience will be. I just want to give a little insight on a lay person’s view of being involved in research and how being honest with them can certainly improve the outcomes. All that I write comes from my own opinions and experiences.
Have you ever felt that someone, or some services, whatever that or they may be are not being totally honest with you? I know I have, and when the tables are turned can we say we are honest or truthful when we interact with others? There have been many studies trying to establish why we lie or share untruths and I am not for one minute going to try and analyse them. I want to share with you how, over the years, I have been involved in the area of mental health research and how I have come across the big question of who to believe. That may sound like I don’t trust those I have worked with, well that’s not the case. I have put a lot of effort into getting involved in research projects about the many aspects of my life that I find interesting.
I have a mental health diagnosis of Borderline Personality Disorder, which does not have a great deal of positives given to it for those that live with it. Especially from those that report on it. Some of the studies I have been involved in have been about Personality Disorders and the different treatments and services available. On the whole these projects in my opinion have bought the best out of people like me. Having been involved in interviewing people with diagnosis of Personality disorder was interesting as I found they were really open with me and commented on how they felt they couldn’t be as open with the researchers. Now by that I don’t know whether they were not totally honest or whether they just left bits out, who knows.
My preparatory reading for this blog was small, but I read that sometimes when we are not honest it is because we want to control the situation. I can confess that maybe the case sometimes as I am sure some of you may do also. As humans we can be quite selfish wanting to be in control to help save ourselves from a situation, we may feel threatened by. As an unqualified person in research, working with the researchers whether that be academics, clinicians etc. I have been honest about how my life has been affected by my health concerns. That can be very tiring and emotional; telling someone the very things that you have to cope with on a day to day basis. Don’t get me wrong I know everyone has struggles, it’s about how we cope with them and indeed who we share them with. Researchers can be focused on a theory and find it difficult when someone like me says it’s not like that for those who live with whatever the issue is. In the work I have done, (on a more positive note) this is beginning to change.
Recently, I have been involved in a couple of studies where I have actively been able to help shape the research question and this has been because I have been honest in meetings about how the issue affects me and others who experience the issue at hand. Sharing my experiences honestly with researchers has also been a great motivating and life changing experience. Little did I know that sharing can influence those who are ‘doing’ the research in the mental health arena. I shall never be an academic or indeed a research fellow but I would like to think that being honest with them can not only change the people’s lives, that they are researching, but can also aid those doing the research and the benefits to having lay people involved in shaping their future research.
One thing I would like to finish with is: when including lay members onto your study teams please be open and honest with them about who, what, where, when and how you would like to involve them but also be prepared to listen to people’s experiences, this could change the nature of your research. Research in the world of academia is very competitive but please be honest with yourself, who is the research for? Your reputation or for those you and the services serve.
This blog was written by our involvement volunteer and advisory board member Debbie.