Research is for LIFE not just for….

What a shame that the Economic and Social Research Council (ESRC) has pulled the plug on the LIFE study.
See: http://www.theguardian.com/society/2015/nov/01/life-study-esrc-cancelled-mothers-ethnic-recruitment Also: http://www.nature.com/news/massive-uk-baby-study-cancelled-1.18650

Launched only last year, the aim of this research was to recruit thousands of mothers and collect data about their babies as they grew up. Such work is really important in helping us to understand associations between life events and disease.

ESRC announced its decision to close the initiative last week citing problems with recruiting participants. It is quoted that £9 million had already been spent on the work.

Many people are not happy about the decision including the researchers. It does feel a little premature in my opinion. It also seems terrible timing. After all, what message does it send at a time when Ministers are looking at science spending? It might have been judicious all round to tough it out, to give it more time.

To be fair another similar and much more costly study has recently been closed in the U.S. for the same reasons leading to a lot of hand-wringing as to whether such research is truly viable (see the Nature piece above). I think somewhere in the media someone described it as a ‘wake-up call.’

Meantime, here in the UK, the talk is of learning lessons. Not having seen the detail of the original proposal nor knowing the ins and outs of the last few months, it seems wrong to speculate too much in this blog. But I do hope the post-mortem considers two questions.

First, whether this episode sheds any light on the role of public involvement and engagement in strengthening and improving studies including recruitment? There are many stories of struggling studies being turned around with public involvement in their recruitment strategy.

Second, whether LIFE’s passing holds any wider lessons for how we think about working with ethnic populations? It was known that recruitment among these groups would be difficult; could more have been done in this instance? I have a gut instinct that we are far too complacent about this sort of challenge in research here in the UK compared to other countries. It’s why we gave such prominence to it in the ‘Going the Extra Mile’ recommendations.

Patricia Lucas, Maggie Leggett and I had a piece published in Nature in 2014 highlighting that many cohort studies have very poor public involvement and engagement strategies. Indeed, some have none at all. So is it any wonder that, as a number of commentators note, this sort of research is struggling with response rates falling. Perhaps they share a fundamental flaw in not engaging people about the best way to recruit them.

As I have said before, I am not drawing this conclusion about the LIFE study. And, fair-dos, if the soul-searching concludes it really wasn’t going to be a runner then so be it. But, as we tell our children, the worse possible result would be to have to write ‘could have tried harder’ on the final report.

Have a good day.

2 thoughts on “Research is for LIFE not just for….

  1. Hi Simon thanks for the blog. Like you I was surprised that this programme was halted, but also surprised at their difficulty in recruiting participants.

    The Born in Bradford Project (BiB) (http://www.borninbradford.nhs.uk) has been tremendously successful – tracking the lives of 13,500 babies since its inception 2007, and it is working with a population with a very high proportion of people from minority ethnic communities.

    So, it clearly can be done. Having been around on the periphery at its inception I think that one of the key reasons for its success was the way it set out to motivate and engage a wide range of organisations and communities from the start – it did feel very much like a joint enterprise – a city initiative, a programme with a real practical purpose and hence direct relevance to the people and organisations of Bradford.

    For a lesson in public involvement check out the BiB ‘Fathers Gallery’ – http://www.borninbradford.nhs.uk/parents-families/the-bib-film-photography-and-poetry-gallery/photo-gallery/tester-page/ and the BiB ‘Families Gallery’ http://www.borninbradford.nhs.uk/the-biB-film-photography-and-poetry-gallery/photo-gallery/meet-the-bib-families/

    Best wishes

    Mark

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  2. This is a study was was screaming out for Patient Engagement – on in this case, Mother / Child engagement. This sort of research can benefit from a 2 way involvement with Mothers / Babies gaining information in return for their participation.

    Mothers (and Fathers) will want to know how such an involvement might benefit themselves and their child. Transparency on information sharing, and feedback are crucial.

    Sadly, the principle of patient engagement can be a hard sell, with resistance from the care givers that see this as something that can increase the time they spend, and, potentially circumvent their doctor / patient relationship. In reality, such solutions such as Clinpal (www.clinpal.com) augment the patients support from primary and secondary care offsetting any potential burden that either the doctor or patient might feel.

    Maybe the work we are doing at CPRD is the way to go for future research engagements.

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