Participant engagement in longitudinal studies: A knowledge exchange workshop

I spent a fascinating day last Friday, accompanied by my colleague Gina Crivello, at a meeting organised by the CLOSER network of longitudinal studies – talking about the importance of ‘participant engagement’, which is essential for cohort maintenance (and minimising attrition). Within Young Lives, we call this ‘research reciprocity’, and for us it’s an integral part of our approach to being an ethical study. It is essential for maintaining the trust of the children and young people we work with and for enabling respectful implementation of our survey. Over 30 UK and European cohort studies were represented at the meeting, and many of them are striving, like us, to achieve a careful balance, and working out how to ‘compensate’ and say thank you in a meaningful way – and how to communicate findings in a way that is easy to understand.

Like many UK studies, The Millennium Cohort Study (Child of the New Century) sends an annual mailing, and  The UK Biobank uses e-mail and SMS to communicate with its 500,000 participants – ever mindful of their commitment not to overburden them with too frequent communication. The Avon Longitudinal Study of Parents and Children is fortunate in working in a geographically focused area – so they can hold coffee mornings, ‘summer schools’ or ‘research festivals’ for their cohorts (14,000 children born in 1991-92 many of whom now have their own children – the ‘children of the children’, known as COCOs). We talked also about ‘hard to reach communities’ which is, I guess, how we might describe the Young Lives children – most of whom don’t have access to computers and mobile phones so we can’t keep in touch with them by sending cards, or e-mail or texts. Instead, we take pictures of the children and of their family in front of their home, to show how they have grown and changed since our last visit. For many families, these are the only photos they have of their children and they are much treasured. And we also do a lot of face-to-face work, talking to the children, their families and community leaders as soon as we can after each study visit. Here’s my presentation about our approach and activities in this area – and what we have learned as we go. The tips that resonated most for me came from Robin Morton from the Lothian Birth Cohort Study – a fascinating study of ageing and cognitive health, working with almost 2,000 older Scots (born in 1921 and 1936) – who had taken all taken cognitive tests while at school (age 11) and have been revisited in the 70s and 80s to see how their health is faring. Robin’s advice was to:

  1. Congratulate them: send them a birthday card to keep in touch (for some of their older participants, it’s the only greeting they receive).
  2. Ask them to tea: their reunion meetings at the Scottish Parliament have been very popular.
  3. Work with them: ask volunteers to help with presentations, for example to research funders or for lobbying at the House of Lords.
  4. Tell everyone how special they are: this one’s amazing! – they have scanned the brain of one of their participants and created a 3D printout for the National Museums of Scotland).
  5. Tell their stories: the research team has worked with artists and writers to create portraits and life-stories. I like this one because it is similar to some of the work we have done by writing up longitudinal profiles of some of the Young Lives study children.

Several of the presentations, and much of the discussion focused on the challenges – how to do good engagement work with constrained resources (time and money), the ethical challenges (e.g. whether and how participants should receive incentives), and the effectiveness. What I took away from the day, however, was the huge energy, creativity, and care that research teams give to this aspect of work. Our data are valuable – but without meaningful engagement with and from our participants, all essentially meaningless.