What does Longitudinal mean
A longitudinal study is an observational research method in which data is gathered for the same participants repeatedly over a period of time. Longitudinal research projects can extend over years or even decades. In a longitudinal cohort study, the same individuals are observed over the study period. In the NICOLA study participants will be contacted every 2 years.
Who is conducting the study
The study is being carried out by the Centre for Public Health, Queen's University Belfast (QUB) in collaboration with an interdisciplinary panel of researchers with expertise in various fields related to ageing. The study has been reviewed by an independent group of research professionals and has been approved by the Queen's University Research Ethics Committee. The interviews are being carried out by a leading market research company called Ipsos MORI.
How do I know this is a legitimate study
All interviewers will carry photographic identification and any communication you receive will either be from Ipsos MORI or Queens University Belfast. Any other concerns can be taken up directly with the NICOLA office.
How were participants chosen for the study
Over 400,000 addresses were identified as having a household member of 50 years or above. A method was used to provide a smaller random sample that represented the whole of Northern Ireland. This resulted in over 14,000 addresses. An interviewer will visit the address, confirm that someone over 50 lives there and then ask if that person (and any spouses/partners) would like to take part in the study.
Do I need to prepare anything
There is no need to prepare for the interview. No special knowledge is required. We just want to hear about you and your life experiences.
Why is the study important
The population aged over 50 is the most rapidly growing group in Northern Ireland. On average people are living longer and retiring earlier. From a scientific point of view we do not know nearly enough about how the health and economic resources of Northern Ireland households are linked, and this means we do not know enough about the implications of population ageing. Those currently over 50 are the first generation to experience extended retirements and active healthy ageing. By forming the basis of this study you will provide the answers needed to inform government policy both now and for future generations.
Why do you need my written consent
Your participation in NICOLA is completely voluntary. By signing the consent form you are confirming your willingness to take part. In particular you would be agreeing to allow an interviewer to ask you questions about your family, work, pensions and health and the agreement that we could contact you again in the future.
What happens if I agreed to participate and have now changed my mind
Even if you do consent to participate, you are free to withdraw at any time should you wish to do so by letting the QUB NICOLA office know. Participants are also welcome to contact the office to ask any questions about the study or discuss any concerns.
Do I need to agree to everything
Obviously the more information we have from you as an individual the better, however if you feel uncomfortable with any of the questions during the interview you do not need to answer or any aspect of the Health Assessment you do not need to partake in that section. If you have any concerns please feel free to contact the NICOLA office or speak with the nurse at the time of your health assessment and guidance can be provided to enable you to make an informed decision.
How is my privacy protected
We will treat the information you give us in the strictest confidence under the Data Protection Act 1998. In addition the data has been anonymised to protect each participant's identity. Participants will be provided with a NICOLA identification number. The results collected are used for research purposes only, individual Participant information is combined with other participants information to provide an overall summary of statistics. No link will exist to either an individual or an address when results are published. You will never receive any junk mail as a result of interacting with NICOLA nor will we pass on your details to any organisation for commercial purposes. The study has been approved by the Queen's University Belfast Research Ethics Committee which ensures that proper safeguards are in place in line with Data protection regulations.
Are the results confidential
Strict measures are in place to protect confidentiality. Each participants will have their own unique NICOLA identification number. Any personal information (such as name, address and date of birth) is handled separately in relation to all other data. That means all data and samples are completely anonymised and access to such is for ethically approved research. Computer Security is utilised to block unauthorised access , data provided to researchers will not include personal identifying details and no data that could identify an individual or an address will be made available to any government body, council or member of the public.
How will the data be stored
All data and samples are anonymised and stored at a very secure level. Personal identifying data is held separately from interview, questionnaire and health assessment data as well as sample data. They can only be linked utilising the NICOLA ID which has no external meaning and only a small amount of NICOLA office staff have the ability to do so. Blood samples taken for long term storage are securely kept within Queens laboratory facilities at the Royal Victoria Hospital which are temperature monitored 24/7.
How long will NICOLA be holding the data
The results of the study will be held and stored securely for a minimum of 10 years.
Why is it so important that I take part if I have been asked to
Although we do not know any personal details about you prior to your agreement to participate, your household has been identified as having someone 50 years and above in it and as a result of the sampling technique to obtain the addresses you are a unique representative of your part of the community. We cannot replace you nor can we choose to automatically select someone else in the same area. It is important that all types of people join NICOLA. We would like you to take part whether you are in good health or have health problems, whether you have a disability or may require assistance reading questions, whether you are aged 50 or a 100. No special knowledge is needed to take part.
How will the information be used
To determine an environment for ageing well we need to explore the factors that influence successful ageing and the impact that this brings to the health and economics resources of Northern Ireland. The study will provide an accurate picture of the needs, characteristics and contributions of people aged 50 and above in Northern Ireland that will prove to be invaluable for policy makers and public sector service planners and can also be utilised by the voluntary and private sector in the provision of adequate services and facilities.
- Some key questions this study will address are:
- What is the relationship between Health and Wealth?
- What determines the nature and timing of retirement?
- How important are household and family structures to health, wealth and quality of life?
- How adequate are financial provisions for retirement and how can policy help?
- How should the government design the use and quality of health services?
- What is the nature and structure of social networks, support and participation?
Who pays for NICOLA
Funding has come from a number of sources; UKCRC Centre of Excellence for Public Health Northern Ireland, The Atlantic Philanthropies, Medical Research Council (MRC), Economic & Social Research Council (ESRC), Office of the First Minister and Deputy First Minister (OFMDFM) and Centre for Ageing Research and Development in Ireland (CARDI)