lewisfromlewis / consent-views

Survey on the approaches to consent used in research at RDH ICU

Attitudes towards conducting health research in intensive care units

Aims of the research

Compared to many other places where people might receive healthcare, it is important, but difficult, to do research in the Intensive Care Unit. This is because patients are very unwell, with a higher proportion of patients with unusually severe disease or unusual responses to disease, and are often unable to have long and detailed conversations abut consent. These are features shared by prehospital acute care, by Emergency Departments, and by emergency response care in other settings.

In Australia we have a transparent and ethically sound regime of designing, conducting, and supervising research. Despite this, there is little written on public beliefs and attitudes towards research, or even on those of healthcare staff who are not specialised in research design. It is important for the ethical design and review of research, and for public trust in the safety of research, to ensure that we have public justification for the processes designed to support good choices and the learning healthcare system.

This study aims to:

• Determine the views of patients, their relatives or friends, and staff relating to certain ethical imperatives or processes support research
• Estimate the attitude of those groups to knowledge in healthcare, and how it is obtained
• Estimate the willingness of those groups to take part in research on an altruistic basis

Participant Information sheet

This survey is voluntary – you are free to SAY NO. We appreciate your time to consider this request, whether or not participate.

Research is a vital part of looking after patients. Research is done to find out how we can best care for patients. Participating in research may not benefit the patients in the research projects.

Many things we do in the ICU have to be done very quickly because the patients are very sick and need urgent treatment. This includes some of the medicines and treatments that we are researching. There is often no time to ask or explain to the patients or their families / friends about research studies. For that reason we sometimes enrol patients into research projects, and then ask them or their families if it is ok to remain in the project afterwards, when they are recovering or when things have settled. This is called consent to continue.

The purpose of this survey is to find out what patients, families or friends think about being enrolled into research projects, and allowing patient information to be used in research. We want to clarify what is acceptable to the patients and families that we care for.

This project involves a survey. We anticipate this will take 15-20 minutes of your time. The survey is anonymous. We want to confirm whether you are a patient, or a relative or friend of a patient, but we will not record your personal information for the research project.

Please let us know if you would like to know the outcome of this project. We can take your details and forward the results to you, whether or not you choose to take part.

If you have any concerns or complaints regarding the ethical conduct of the study, you are invited to contact Ethics Administration, Human Research Ethics Committee of the NT Department of Health and Menzies School of Health Research on 8946 8600 or email [email protected]