Oh the pain: Ethics


I recall from what seems to be a dim distant past being advised to get started early on my ethics application for my PhD project. It was in fact the NIHR who put this in the letter when they first wrote to award me my fellowship. I confess that it didn’t particularly register this point as I was rather distracted at the news of getting the fellowship. And leaving work. And starting my PhD. At UCL! And getting on with the first stage of my research- that did not require ethics.

Then last summer my supervisor and I decided I needed to commence work on my ethics. We thought it might be useful to tackle it a little earlier than planned on my epic Gantt chart. Now I have run a marathon. Yet this feels rather like running a marathon and being told half way through you have a second marathon to run that no one had previously cared to mention. Yes, ethics is a mammoth endurance test.

As speech and language therapist in the psychology and language sciences department there was little guidance in the art of applying for NHS ethics. And although I am not quite finished I feel I need to put some things down on paper for others who may choose to cross the jungle. So here are a few tips and hints from my journey so far:

– It’s a massive document (bigger than your grant application most probably) so prepare yourself.

-If you know ANYONE else who has recently done their form ask for a copy- it will be invaluable.

– It is littered with danger zones: consent, data transfer, risks to patients. You need an eye for detail- it is useful to have someone helping you who has this skill.

-If you are working with people with dementia and you expect most people to have capacity when they do your study then do stress this in your application.

-If you are working with people with dementia and they are likely to progress during the course of the study stress that you will check their decision-making and consent repeatedly throughout the study.

-Refer to the Mental Capacity Act (2005) and the Code of Practice (2007) – it is really helpful to use this when writing about the consent process, particularly when considering whether it is in a persons best interest to participate in research and asking for a consultee to consent on behalf of the person.

-If you are working with people with communication difficulties create a ‘communication friendly’ Participant Information Sheet and Consent Form with input from people with communication difficulties themselves and mention they have helped in your application.

-Try to think of ways you could electronically transfer data safely rather than going to collect it. You may benefit from talking to your digital curators / data managers within your institution or even the Information governance people at the NHS sites.

-Get in touch with your local CRN- clinical research network. They should be able to support you in making your study work on the ground in terms of local buy in. Speak to them at some point before you submit.

-Keep going and don’t give up. You will get there. In fact you will also find it useful in developing and guiding your thinking around your methods and the study itself.

I am planning to join forces with another researcher and PhD student to write a few more tips and hints. I will keep you posted.

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