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Research FAQs

What is research?

Research is a study to discover new information or gain a new understanding of it. This helps increase the knowledge we have about human health and wellbeing. Research can cover therapies, medicines or services. Research is done so we can:

  • Provide life changing treatments
  • Diagnose diseases earlier or more accurately
  • Prevent people from developing conditions
  • Improve health and care for generations to come
  • Ensure everyone has a better quality of life

Reference: https://bepartofresearch.nihr.ac.uk/about/what-is-health-and-social-care-research/

What is involved?

The process varies from study to study; if you are interested in taking part in one of our research studies or a member of our team approaches you to ask if you would be interested, you will then be given a patient information sheet. This outlines what the research study is about and what it will entail for you.

The research team will then assess if you meet the criteria for the research study; research studies have inclusion and exclusion criteria to ensure that the researchers will be able to answer the research question. If you meet the criteria and agree that you would be interested in taking part in the research study, a member of the research team will go through the study process with you and receive informed consent before proceeding any further.

At St Catherine’s, the studies we take part in are either questionnaires, interviews or focus group studies.

 

Do I have to take part?

It is up to you whether you choose to take part or not in research; taking part in research is completely voluntary. If you choose to take part in research, you will be given a patient information sheet to keep, along with all the details of the research study.  If you then decide to continue to take part, a member of the research team will receive informed consent. If at any point during the research study you decide you no longer want to take part, you can withdraw at any time without a reason. This will not affect your normal standard of care.

 

How is my data managed?

We use personally-identifiable information to conduct research to improve health and care. As a charity providing care to terminally ill people and those close to them, we have a legitimate interest in using information relating to your health and care for research studies when you agree to take part in a research study. This means that we will use your data, collected in the course of a research study, in the ways needed to conduct and analyse the research study. Your rights to access, change or move your information are limited as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.

If you wish to raise a complaint on how we have handled your personal data, you can contact our Quality and Risk Manager who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioners Office (ICO) – http://ico.org.uk

Our Quality and Risk Manager is Jane Abbott and you can contact her at: janeabbott@stch.org.uk

 

What happens once the study finishes?

As part of the consenting process, the study team will ask if you would like to see the results of the study. Once the study has been published, if you said yes, the study team will send you out a copy of the results. This may be via email or post. Some studies may take a couple of years for the study to finish and results to be written up.

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