A whole lot of love for longitudinal studies

Josie McGregor is a part time Social Policy student and has been working at ESRC for two and a half years. She is a Policy Officer for ESRC’s world-leading portfolio of longitudinal studies, including the birth cohorts. She also supports ESRC’s knowledge exchange activities in her Junior Investment Manager role for the Social Science Section at the Parliamentary Office for Science and Technology (POST).

Josie

A whole lot of love for longitudinal studies

As a social policy student I am fascinated by the amazing social science research that is done in the UK which informs and influences policy and practice. I am incredibly lucky to be in a role which gives me a first-hand look at the way social science research can have immense positive impacts on our lives.Over the past few years I have developed a fascination with longitudinal studies and have had the pleasure and privilege of working with the research teams at some of the longitudinal studies we fund. Working with these studies has given me a real appreciation not only of the work that goes in to commissioning them, but of the work and dedication of the remarkable individuals (senior academics based at top universities) who run them. The findings gained from these studies have immense importance, but…

What are they? How do they work? Why don’t I know about them? Why are they important?

These are just some of the questions that were recently asked following publicity around the release of Helen Pearson’s book The Life Project.  The book details the story of the National Survey of Health and Development (NSHD), a longitudinal study funded by the MRC which has been following a cohort of participants (all born in March 1946) since birth. The book was released to coincide with the 70th birthday of the participants, and it explores the findings of the study and the life-changing impacts these have had on our society. It also explores other longitudinal studies in the UK.

The Guardian shared a review of the book and an article on their website and Facebook page, both of which prompted hundreds of comments from individuals who were eager to learn more about this interesting, innovative and important type of research. What struck me was the number of people asking “why haven’t I heard of projects like this before?” and “why are they kept so secret?” The answer is that they shouldn’t be and aren’t deliberately!

The UK’s longitudinal studies have dedicated communications teams who work hard to publicise the studies, however these comments and questions indicate that longitudinal studies are still somewhat hidden treasures of the UK, albeit unintentionally.

According to the MRC’s strategic review of the largest UK population cohort studies (PDF), it is estimated that over 2.2 million people in the UK (that’s 3.5 per cent of the population!) are taking part in cohort studies; however there are many people who haven’t heard of them or don’t know what’s involved.  The research community is proud of the cohorts that have been built and the life-changing impacts their findings have enabled. The ESRC in particular is proud of its world-leading portfolio of longitudinal studies. I want to tell everyone and anyone who’s willing to listen all about them.

So, what is a longitudinal study?

It’s a method of research where information (referred to as data) is collected from an individual (referred to as a participant) or household through the form of a survey, repeatedly over time. If a group of participants share a particular time-specific event, it’s known as a cohort study. If the study starts with a group of babies of the same age, it’s known as a birth cohort. The survey is then repeated over a period of time that may span years or even decades over the life course.

But what information do the researchers collect from the participants?

The type of data collected from the participants depends on the type of study that is being undertaken. A participant will generally be asked questions about their family life, occupation, health, or hobbies and in some cases will be asked to provide samples such as blood or urine. Participants give their consent for this data to be collected, stored and used for future research.

They store the data? How is it then used? And how do I know my information is safe?

Concerns that the research community often hear regarding any type of research that collects personal data are around the storage and use of participant data.

The data is stored safely and securely and, subject to individual participant consent, it may be de-identified/anonymised and linked to other data such as the National Pupil Database, for example. The anonymised data is made available for research purposes only, subject to conditions. The data is only used by accredited researchers who are deemed to have had proper and appropriate training, and whose research projects have been approved by university ethics committees, with strict governance in place for the use of participant data.

Ok, so why are the studies and participants so important and what’s in it for me if I were willing to participate?

The findings from longitudinal studies have the potential to be quite literally life-changing. By tracking participants over time and collecting information about their lives, researchers can identify trends and changes at the individual level. Through understanding these changes and what different factors have impacted on peoples’ lives, the findings create a robust evidence base than can be used to influence policy, practice, and society as a whole.

Ultimately, participants are crucial for any longitudinal study. Without them there simply are no studies. In order for the findings to have weight in showing evidence to policy makers, practitioners and everyone in our society that changes should be made, it is vital that studies have a strong cohort that represents the UK’s population.

In January 2016, I went to a workshop held by the Cohorts and Longitudinal Studies Enhancement Resource (CLOSER) which brought a number of people (academics, research users, funders, government researchers and policymakers) together who are involved in longitudinal studies to discuss issues of participant recruitment. We brainstormed ideas to resolve these issues and discussed other barriers which are faced today in successfully running these studies. The research community is all too aware of strains on people’s time these days, particularly compared to the NSHD cohort of 1946. However, through innovation in collection methods (for example, wearable technologies) and engagement, barriers such as competing work-life pressures can be overcome to ensure that these longitudinal studies continue to be a jewel in the crown of science in the UK.

As we move forward to the future, facing all kinds of different societal issues and with increasing questions about life, longitudinal studies are more important than ever in helping us to understand and tackle these issues and questions and make our society a better, safer, healthier place.

You’ve convinced me (hopefully). How can I become a participant?

Participants are recruited for studies and surveys in a number of different ways. For some surveys, individuals can sign up to participate through sites such as YouGov or by being approached on the street.

Unlike these surveys, the sorts of big surveys that ESRC funds (such as the longitudinal studies, British Election Study and European Social Survey) are not generally ones that people can put themselves forward to sign up for, although there may be exceptions.  This is because they use random probability samples, which is where a sample is drawn at random from a sampling frame, such as the postcode address file or the birth register. The selected individuals are contacted to take part and only those people, and hopefully all of those people, will consent to being a participant.

Whilst you cannot nominate yourself to sign up to a study, it is quite likely that at some point in your life you may be contacted and asked to take part in one. It’s vitally important that the views and experiences of all sorts of people are taken into account; the participation of every individual who takes part benefits society as a whole and each of us as individuals. As this is the case, and if you are contacted in the future, I urge you to consider contributing to a study which could change our lives for the better.

Publications on findings and impacts from ESRC’s longitudinal studies:

You can follow Josie on Twitter or email her at ESRC.

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