What engagement professionals can learn about ethics from university research

Have you ever happened to take part in university led research, rather then public sector led engagement?

I don’t mean formal clinical trials, I mean surveys, focus groups, etc; the same kind of methodologies we regularly use.

You might not have realised it was a university piece at the time, but you almost certainly will have noticed a difference pretty much as soon as you started. You will have been unable to miss the extremely long and detailed information provided about why the research is being undertaken, how your information will be handled, whether it is expected to impact you, and where to get help if you need it.

This information is included before the questions so that they researcher can demonstrate that the participants fully understand what they are taking part in and why. It is part of the requirements of the ethic’s committee that researcher will have had to sought approval from in order to progress with the research.

Much of the research that is undertaken by universities is almost indistinguishable from the engagement public sector bodies do. Sometimes it is even done on behalf of, or with, public sector bodies, creating a two-tier system within those organisations.

So what are ethics committees, and what can we as engagement professionals learn from them?

The role of ethics committees

In the not so distant past, it wasn’t uncommon for research to be pretty brutal.

Participants were definitely harmed in the process.

From children being isolated for extended periods, infants being taken from mothers, people being electrocuted – or thinking they are electrocuting others, to fake prisons with bizarre rules being set up, the research world has run some pretty extreme experiments. Ones where the wellbeing of the participant (and their consent to what was happening to them), was definitely secondary to the importance of the outcome of the research.

Whilst some of this research led to important findings, at what point does harm of an individual or small number of individuals become acceptable in the name of science? Here we enter in to the very murky realm of the greater good. So murky in fact that one of the earliest ethical codes in research, the Nuremburg Code, was developed after the Nuremburg trials of the Nazi doctors.

From this time, ethics became of increasing importance in research and ethics committees started to appear in UK hospitals and universities in the late 1960s, but they only really gained prominence in the 90s – 00s. Now, you will not see any legitimate university research which hasn’t gained approval from an ethics committee, because no publication would publish their work without it.

What an ethics committee considers

An ethics committee looks at a piece of proposed research and checks whether there any potential risks to the participants, and whether the benefits of the study outweigh the risks. Obviously, it is not their job to make sure that no risk happens, or there could be no human medical trials, but is their role to ensure that the risk is an acceptable level against the possible benefits. They consider psychological risk as much as physical risk.

They also check the research methodologies and processes for informed consent, privacy and confidentiality, protection of vulnerable groups, and respect for dignity and rights (how the participants’ autonomy, welfare and dignity are maintained).

To put it simply, they make sure that the research is worth doing, and can be carried out fairly without harming, exploiting or disrespecting the people involved.

Is the process bureaucratic? Yes. Is it important? Undoubtedly.

What this has to do with engagement

I would like to think that no one is reading this and thinking, “But we don’t need to worry about harm and dignity in engagement.” so the question is less what this has to do with engagement but whether there is anything we can learn. And, we have no similar process, but should we?

I have sat round tables with many engagement professionals, leading projects that specifically target vulnerable people, people who have had poor experiences, people who experienced bereavement, people who may have conditions that make social or emotional processing difficult, people experiencing mental illness, etc, etc, etc. How to make sure that people are supported in the best way is always discussed; it is always important, but it is not encoded in a process.

No one sets out to harm someone when doing engagement.

Despite this, I have sat through engagement delivery when people have been distressed, cried sharing their stories, felt the need to take a moment. Many times. It is the nature of lots of the topics we have to talk about. I, and all my colleagues, have offered emotional support, been calm, and taken trauma-led approaches. But I have often felt hopeless, worried about the person, and wishing there was more I could do for them.

The truth is that we often go into these situations woefully unprepared to support people with the impact of what we are asking them to share. And I am not sure that is ok. It is not fair on the staff who walk away feeling helpless; it is not fair on the person walking away with a wound reopened.

It isn’t always predictable either.

One particular example springs to mind. We were supporting a primary care team with the change of a GP practice from one owner to another. We set up some sessions to meet with people, explain what and why, answer questions, take feedback on what was important to them when we were choosing the new owner. What we got was the expected concern, anger and confusion, but also some completely unexpected stories of loss, potential malpractice, personal stories of poor care for people with suicidal thoughts, people who had experienced abuse as children and adults, and much, much more. Those sessions have always stayed with me. We were not equipped for this, we did not have information to hand to help these people; all we could do was listen, record, and be empathetic.

Hearing, recording, and being empathetic goes along way. In many cases that is all people want: to feel heard. But if we are being truthful, it isn’t enough, it isn’t ok. Having numbers for support groups, services to point people to, information about what to do if people feel affected would have been much more helpful.

Having support structures for staff is vital too. After this particular engagement, we asked a senior nurse who was trained in clinical supervision to run a group session with us to share, reflect and process. It was emotional and powerful, but it worked. It helped us deal with some of the pain and move forward.

In order to have those numbers, that support information, meet the needs for people and staff, we would need to think about the potential impact in a much broader and more comprehensive way than the odd conversation here or there.

And this is what I think  we can learn from ethics committees.

Do we need ethics committees in engagement?

I’m not prepared to go all out and say yes to this, but neither am I prepared to wholeheartedly say no either.

I think engagement would be better for taking a consistent approach to considering consent, dignity, impact and privacy, and developing an action plan accordingly. I think that having some kind of paperwork to complete that is checked by someone outside the engagement process would be helpful too.

Do we need to go all the way to ethics committees? I would applaud any organisation that took this route, it would undoubtedly be learning from what works well elsewhere and implementing best practice. But I also understand how bureaucratic public sector bodies are already, and I know my heart would’ve sunk at the thought of another governance hurdle.

So I will sit on my fence, and advise you all to give serious thought as to how ethical your engagement really is and what you can learn from the ethics committee approach that works so well in all our research institutions.

Open Voice Lab recommendation

At OVL, when we plan engagement, we always think about the impact on the people who take part, and whether any additional support needs to be offered or specific information needs including. We can help you navigate tricky projects in this way, giving you more confidence in your engagement.

Reach out to have a conversation with us.

PS no AI was harmed in this blog written 100% by me.