Participants/Potential Participants in a UCD study
This information clarifies what you should expect if you are approached about being a research participant in a study being carried out by UCD staff or students.
Being a research participant can include being asked to do one or more things. The following is a sample list of the most common activities a participant is required to do for research purposes:
- Filling in a questionnaire or a survey;
- Taking part in an interview or focus group;
- Being audio or video recorded;
- Being photographed;
- Being observed (e.g. in your home, class room, place of work, or some other public space);
- Giving blood, saliva, hair or urine samples;
- Undertaking exercise or other physical activities;
- Online Questionnaires/Surveys
How will I be approached to take part?
The study you participate in may be very simple and require very little effort and time on your part, or it may be very complex and require a great deal of time and effort. Either way, you should never feel as if you are being pressured to participate and the researcher asking you to take part in the study should always provide you with a Participant Information Sheet and Consent Form before you agree to take part. The information sheet will be provided to you in writing and it should inform you of the following:
- who the researchers are and contact details for you to use if you have any questions or want to contact the researchers after participation.
- when, where, and how long your participation will take.
- what information, recordings and samples will be taken from you and how they will be used and stored (will be kept with your name and other identifying details or will be held anonymously).
- whether your travel expenses will be paid.
- Explain that you will be free to withdraw from the study at any time without giving a reason. The researcher should also make it clear to you if there are any time limits on when you can withdraw the information, samples or recording you have provided.
- Explain whether you will be identifiable in the final research report/thesis. In most research the participant data is de-identified but you should be aware of what is happening to your data and if the researcher is archiving or destroying the data.
- Explain if there are any risks involved in the research project and how these will be kept to a minimum.
- Provide you with the contact details of relevant support groups should you find your participation in the study to have been stressful or upsetting.
- Explain any expected benefits from taking part in the research and whether you will receive feedback or not.
The researcher should
- go through the information sheet with you in person in order to ensure that you understand what is going to happen.
- allow you to take the time to consider whether you wish to participate (at least 24 hours)
- allow you to ask for further information should you wish for more clarification.
It is the researcher's responsibility to ensure that you fully understand the Information Sheet.
How do I indicate that I want to take part?
If you decide that you wish to participate in the project then you will be asked to sign a consent form (except for anonymous questionnaires). The Consent Form is designed to check that you have understood what you are consenting to. Sometimes researchers use self-completion questionnaires where you will be asked to return it to the researcher.
For self-completion questionnaire studies:
- if you return a questionnaire completed with your name and contact details provided, this indicates to the researcher that you are both happy to participate and for the researcher to contact you;
- if you return a questionnaire completed but without your name or contact details (in other words "anonymised"), this indicates that you are happy to provide data but you do not want to be contacted by the researcher or to participate further in the study.
What do I do if I need more information or if something goes wrong?
You should contact the researcher, and/or their supervisor, using the contact details that they provided for you on the Information Sheet. If you have a complaint you should contact the researcher first. If you are not satisfied, or your complaint has not been addressed please contact the Office of Research Ethics firstname.lastname@example.org.
See printable version of the above: HREC Information for Participants in UCD Study
- Data Protection Commission: your rights under GDPR
- European Commission: Ethics and Data Protection
- IPPOSI: The Irish Platform for Patient Organisations, Science and Industry is a patient-led organisation that works with patients, government, industry, science and academia to put patients at the heart of health policy and innovation.