Background

           

How should results from health research studies be made available to you?

Research studies are carried out to answer specific questions on how to prevent, diagnose, or treat diseases or disorders. Many types of research studies exist. For instance, clinical trials are used to test new medicines or devices. Other studies might only use interviews or questionnaires to study people’s behaviour in relation to health.

In the UK many patients and people from the general public take part in health research studies. With this questionnaire we would like to find out your views on how results from such studies should be made available to you.

A similar questionnaire is being sent to researchers and people who have taken part in a research study. The information collected will be used to ensure that in the future study participants and the general public can easily access the results of research studies.

This questionnaire can be completed in about 10 minutes. In the first part, we ask questions about the ways you would prefer to be informed about the results of health research studies. At the end of the questionnaire, we ask a few questions about your background (e.g. age) in order to understand more about our respondents.

Any personal information collected in the survey will be kept strictly confidential. All survey responses will be fully anonymised so that they cannot be connected with any particular person. The data will be kept securely for 15 years after the study is completed, in line with Cardiff University and Cardiff and Vale University Health Board policies and the General Data Protection Regulation (GDPR; EU 2016/679). For more information on data protection, please follow the link http://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:32016R0679&from=EN

This study is funded by the Division of Population Medicine, Cardiff University, and run by research staff at the Marie Curie Palliative Care Research Centre, Cardiff.

For more details please contact Mirella Longo (Phone: 02920 687 476; e-mail: longom1@cardiff.ac.uk) or Annmarie Nelson (Phone: 02920 687 473; e-mail: nelsona9@cardiff.ac.uk). If you wish to receive a paper version of this survey, please contact Mirella. You can also contact Mirella to request a Welsh language version of this survey (online or paper).

Please refer to the study information sheet reported at the following link and to the statement of consent reported on the next page.

Thank you for your interest in participating in this research study.