Public involvement in health research: that’s another country right? #diversityandinclusion

When you live abroad you get used to neighbours and friends saying things to you like ‘I’ve got a relative in Rugby do you know them?’ Less so their palpable disappointment that, try as they might, you can’t place their next of kin in a country going on for 65 million people. When I lived in America I used to feel so guilty at times that it crossed my mind to pretend that I did.

More perplexing were those occasions when language differences would come into their own. One time I told a cashier I was from the ‘UK’ only to find myself talking at cross-purposes with her. She clearly thought I had said I was from the Ukraine.

Who can blame our friends from across the water. Or anywhere else for that matter? We are a comparatively small island half-way across the world. And however worldly-wise we would like to think we are as a nation, we are equally naive about our fellow global citizens.

Being in public involvement is not dissimilar.

How many times have you been asked the following question: ‘Do you know someone?’ Or even worse: ‘I am looking for someone with…?’ This is then followed by a very precise description of someone who has the intellect of Stephen Fry, the athletic prowess of Kelly Holmes and charisma of Barack Obama or Mary Berry. All rounded off with the immortal phrase: ‘We don’t want the usual suspects!’

To which a very good friend has suggested I always reply: ‘If you don’t like the usual suspects, wait until you’ve seen the unusual suspects.’

I don’t know about you but I positively groan at the question. More so because it’s usually just a few days before they need people even though they’ve known for months. Also it assumes you have all the time in the world to start emailing and ringing those people you know. And boy is it a time-consuming task.

Yes, to some of our colleagues, we are a small island.

That would not be so bad were it not for the fact that recruiting people for public involvement through personal referral only affirms our misshapen profile as a community. Our informality as a movement is fertile ground for advancing mono approaches to public involvement.

However man-for-all-seasons I would like to think I am, when asked to help I naturally tend to go searching in my predominantly white and Middle-class network.

This is not just a problem for public involvement. It’s also a problem for the NIHR and our health research system. In the US there is a vibrant and at times angry debate about the lack of diversity among people being recruited into clinical trials – minority ethnic communities, women, older people.

Here in the UK the Health Research Authority (HRA) published figures showing ongoing and strong public support for clinical research. http://www.hra.nhs.uk/news/2015/03/10/strong-public-support-for-health-research/ .

The story within this good news story is the more wary view taken of clinical research and issues like sharing data among minority ethnic communities. It’s a problem and the diversity and inclusiveness of our public involvement movement is fundamental to addressing it.

The soon-to-be published report of the Breaking Boundaries review will highlight the need for us all to prioritise diversity issues in future months and years. But there is already much we can do to make things better.

More open recruitment methods, active outreach into communities that must matter to us all, using the People in Research website more, and sharing approaches that work. I was very struck by the comment a young researcher made to me at the NIHR Trainees event last year. She said to me (and I paraphrase): ‘We know how to do it but no one shares what they have learnt more widely.’

We may be another country to some. A small one? No. A diverse one? We have much still to do.

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