Skip to 0 minutes and 5 secondsHi, my name is Anne Nolan. I'm a research affiliate at TILDA, The Irish Longitudinal Study on Ageing at Trinity College, Dublin. In this step we will define what we mean by research and explore how research can play a role in improving our economies and societies. What is research? Most simply, research is the quest for new knowledge. Knowledge to help us plan for the future. For example, what is the size and distribution of our population and how is it projected to change over the coming years? Knowledge to help us find explanations and solutions for major societal challenges. For example, what causes as overweight and obesity? Knowledge to help us analyse the impact of major social and economic changes on our population.
Skip to 0 minutes and 48 secondsFor example, what is the impact of recessions on population health? Policymakers are increasingly making reference to the importance of evidence based policy, which means that instead of policy decisions being made on the basis of anecdote or accepted wisdom, policy makers make use of the latest research to inform their decisions. For example, in Ireland, Healthy Ireland, the national framework for improved health and wellbeing 2013 to 2025, is the new national framework for action to improve the health and well being of the population of Ireland. A key feature of Healthy Ireland is its focus on research to ensure that goals, programmes, and funding decisions are based on robust evidence about the determinants of health and best practice approaches in addressing them.
Skip to 1 minute and 35 secondsThe key ingredient in research is the participant, as without their willingness to participate, there would be no data to examine. Most research uses quantitative data. That is, data that can be summarised in measurable units. But researchers may also use qualitative data gleaned from case studies or in-depth interviews to provide additional contextual information. Data may come from administrative sources. For example, social security data may be used to conduct research on the characteristics of those who are long term unemployed. Increasingly, data is collected via large sample surveys of the population who are followed up at regular intervals for long periods of time. These longitudinal data offer additional advantages over data that is collected at a single point in time.
Skip to 2 minutes and 21 secondsIt allows researchers to understand the causal processes underlying key relationships. For example, is overweight and obesity caused by insufficient physical activity, by poor diet, by poor environments, by genetics, or some combination of these factors, or something else? Longitudinal studies also recognise the multifaceted nature of human life. For example, the ageing process is shaped not only by experiences in relation to health but also by experiences throughout the life course in relation to family, education, work, and social engagement. In recognition of their contribution to evidence informed policy, Ireland has recently begun to invest in a number of longitudinal studies.
Skip to 3 minutes and 4 secondsFor example, the Irish Longitudinal Study on Ageing, TILDA, follows over 8,000 people aged 50 plus in Ireland to examine the determinants of healthy ageing. Across the world, countries are recognising the value of these multidisciplinary, longitudinal studies of ageing for providing important information with which to plan for and understand the process of population ageing. In the US, the Health and Retirement Study, HRS, has been surveying over 20,000 people aged 50 plus since 1992, while the English Longitudinal Study on Ageing, ELSA, has been surveying over 10,000 people aged 50 plus since 2002. New studies in Northern Ireland, Scotland, China, India, and Brazil are currently underway. For participants, engaging in research can be a challenging process.
Skip to 3 minutes and 51 secondsFor example, it may be hard to recall events that occurred long in the past. It may be distressing to talk about certain events, such as bereavement. And some information may be considered private or too sensitive to speak about in person. Participating in a health assessment may involve procedures that involve minor discomfort, such as blood tests. Researchers and data collectors must therefore be conscious of their responsibilities to participants. They must ensure the participants are informed of the rationale for collecting particular types of information and obtain ethical approval before data collection. Researchers must also adhere to relevant data protection legislation in relation to the collection, processing, storage, and use of participants' information.
Skip to 4 minutes and 36 secondsEngaging in research is ultimately a hugely enriching and empowering experience for participants. In particular, participating in a longitudinal study provides a lasting legacy to society. In the UK, data from a number of longitudinal studies which began in the 1940s and 1950s by surveying random cohorts of children and their families and following them up the present are still being used by researchers and policy makers today to inform national policy. What do you think the benefits of participating in research would be?
Being involved in research can have great benefits to both individuals and society, and here we look at The Irish Longitudinal Study on Ageing (TILDA) as a case study. The information that TILDA participants provide is supplying invaluable information to policymakers seeking to plan for, and understand, the process of population ageing.
In common with other longitudinal studies of ageing around the world, TILDA participants provide data for researchers and policymakers via three main types of data collection:
How is research collected?
All participants undergo a detailed computer-assisted personal interview (CAPI), in which a trained interviewer visits their home and asks a variety of questions in relation to their health, economic circumstances and social relationships.
The interviewer leaves behind a self-completion questionnaire, which is designed to collect information on more sensitive topics, and which participants fill out in their own time and post back to TILDA.
Participants travel to the TILDA health assessment centre to undergo a series of physical and cognitive health tests, carried out by trained research nurses. Since 2010, TILDA participants have provided information via the CAPI and self-completion questionnaires every two years, and via the health assessment every four years.
What has TILDA found?
The TILDA health assessment provides important information about the prevalence of disease, and how it varies across the population. A good example is abnormal heart rhythm, or atrial fibrillation, which is a modifiable cause of stroke and heart failure. Almost a quarter of all strokes are attributable to atrial fibrillation.
TILDA has demonstrated that the overall prevalence of atrial fibrillation in the over 50s in Ireland is 3%, that it is higher among men than women, and that prevalence increases with age (for example, nearly 20% of men over the age of 80 have atrial fibrillation).
Of concern is the high level of unawareness of the condition; among those with atrial fibrillation in TILDA, nearly 40% are unaware that they have the condition. Factors that are independently associated with lack of awareness of atrial fibrillation include lower education, living in a rural area, poorer cognitive skills and fewer GP visits.
These findings led directly to an awareness campaign for atrial fibrillation by the Irish Heart Foundation in 2014, and in 2015, the Health Information and Quality Authority (HIQA) used TILDA data in their recommendation that a national screening programme for atrial fibrillation in primary care in the over 65s in Ireland would be cost effective.
Benefits in participating in research
Engaging in research is not a one-way process…
- While participants’ willingness to provide information on many aspects of their lives is already benefiting Irish society via new policy initiatives, participants themselves may also benefit from engaging in the research process.
- Participants receive some feedback on selected health assessment tests (such as height, weight, cholesterol, and blood pressure), and are encouraged to follow up with their GP in relation to any areas of concern.
- They also receive regular communications from the TILDA team in the form of newsletters, tweets and website updates, allowing them to see how their participation is helping to improve the health, economic circumstances and wellbeing of current and future generations of Irish society.
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