Liz Charalambous is a nurse and PhD student. She tweets at @lizcharalambou and is a regular guest blogger for the BGS.
I am in the second year of a PhD researching volunteers in dementia and acute hospitals. The project came about as part of my clinical work as a staff nurse in older person acute care. It was while working on a prevention of delirium research study, I realised that volunteers could play an important role.
The first year of my PhD has been spent mainly completing modules and designing the project from scratch. I have lost track of how many drafts of countless documents have been sent to my long suffering supervisors as they guide me towards refining my ideas, sifting through my thousands of words to put together a robust study which will stand up to scrutiny.
Because that’s what counts for the end of year confirmation review: will my research be robust, am I competent enough to carry it out, is the methodology appropriate, and is it ethical? The panel thought so and passing my end-of-first-year confirmation review meant another door was opened in the maze of PhD life, and the next phase begins.
I was granted sponsor approval (which means the University takes ownership of the project and provides indemnity insurance) and the long awaited day finally dawned. Grim, slate grey skies and drizzly fog accentuated the seriousness of the day. A round trip of six trains and three buses was punctuated by a short wait in a cosy hospital café, run by volunteers.
Considering my project, I took this as a good omen.
After a quick cup of tea, I stood to attention with my supervisor in the corridor of a busy hospital waiting to go into the ethics meeting. I admit to having a sudden flashback to my childhood, waiting to see the headmaster to see if I would be in trouble for some long forgotten minor childhood misdemeanour. Requesting ethical approval is no mean feat, it often takes much longer than anticipated, the information required is painstakingly detailed, and often repetitive. Documents must be finely tuned and streamlined to ensure consistency throughout. Accessing potential participants, context of data collection, and participant information must be watertight, meticulously comprehensive and precise, to satisfy the rigorous review process.
And rightly so.
History is peppered with examples of research ‘gone wrong’, with researchers in positions of power who thought they knew best, and distorted power dynamics resulting in participants being exploited and abused. Take Tuskegee, where for decades African-American males were denied information and treatment for syphilis. These researchers explored the effects of the disease on the bodies of a specific ethnic group, causing misery and pain for hundreds of disempowered and exploited participants. This study continued for 40 years and offspring of the original participants are still in receipt of medical and health benefits. Other examples which spring to mind include the notorious Stanford prison experiment, which explored the psychological effects of perceived power dynamics; the infamous 1970s Milgram study, which set out to explore obedience to authority; and Rosenhan’s foray into psychiatric institutions, to name but a few. Protecting participants is paramount, take for example the case of Henrietta Lacks who had tumour cells taken without her consent. The samples were not anonymised and so her personal information became public knowledge.
Thankfully we have moved forward with tighter regulations to ensure the safety and wellbeing of participants and all those involved in research, with bodies such as the International Conference of Harmonisation as well as safeguards in place for researchers to receive appropriate training to ensure competency to conduct studies. Useful information is continually being developed to streamline this process.
The details of such studies make for stark and shocking reading and fill me with an urgent sense of responsibility to ensure the safety of potential participants. After all, I am hoping to interview people with dementia who may lack the capacity to consent. Nevertheless I believe that in order to effectively explore my area of research and to improve services to people with dementia, the voice of the very people who use them should be actively sought and listened to; an underpinning philosophy which is strongly supported by regularly consulting with local patient and public involvement groups.
Reassuring myself that there was nothing else I could have done (boxes were ticked, drafts perfected as far as possible, and my brain had been racked to think through the entire process), we were eventually called in. I entered to what seemed to be a sea of faces. The seriousness of the occasion was not understated by the formal atmosphere. There are more than 80 RECs across the UK. The Research Ethics Committees (RECs) consist of the crème de la crème of the ethics world; consultants, professors, managers, and most importantly, lay members of the public. Their purpose is to ‘safeguard the rights, safety, dignity and well-being of research participants, independently of research sponsors’ and to decide if the proposed research is ethical.
After a brief introduction, it was on to the questions which, in the end, were reasonable and entirely appropriate to the study – after all, we are all on the same side. I was congratulated on my project and there were a few reassuring nods and friendly faces, before we were finally allowed to go. The meeting served as a reminder of the incredibly privileged position I find myself in, that my research is being taken seriously, that the welfare of the patients we serve is being safeguarded, and how the entire exercise serves as yet another review process to find ways to improve the project.
The result? Well, I received a reply within a week with a request for further details and fine-tuning of the documents to include an increased focus on dementia. This was duly done, sent to both my supervisors for checking and then back to the REC.
A short time later I received an email with the magic words ‘favourable opinion’ and so the game starts again. More revolutions on the seemingly endless hamster wheel that is a PhD, but although inexorably slow, one step nearer to the goal of increasing the body of knowledge in the strive to help people with dementia.