Getting involved

When the public gets involved in research, they work alongside researchers to help shape:

• What research gets done
• How it’s carried out
• How the results are shared and applied in practice.

It's not about taking part in a trial or study to test a new treatment or care option.

It’s about being a member of the research team that works together to design and run the study.

What can I contribute to research?

The experience you have of your own care, or the care of others, is of great value to researchers.

Researchers may have textbook knowledge, but unless they have also experienced it, there will be gaps in their understanding.

Don’t worry, you won’t be expected to have technical knowledge of how research works or have a background in healthcare.

We will support you to learn anything you may feel you need to know.

What difference will I make?

• Your contributions can help shape the planning and delivery of a research project
• You can help us ask the right questions in the right way
• You can help make sure we write things in a way that can be easily understood by study participants
• You can help us make sure everybody knows about the results
• In addition, the involvement of patients, carers and members of the public is necessary for a research project to be funded by the National Institute of Health Research (NIHR)

How will my contribution be recognised?

If you decide to take part in research at the Trust, we will, of course, cover any out-of-pocket expenses you might incur.

In addition to paying expenses, we also want to be able to thank for your time and effort.

This could take the form of a monetary payment or vouchers.

We will discuss this further with you if you decide you would like to help.

By combining clinical practice with research, nurses and other healthcare professionals are able to challenge current practices to assist in raising standards and improving the patient experience.

The Trust encourages clinical staff to build research into their career and provides help and support to enable this.

People can join trials in various ways, often this will depend on the type of trial it is.

Some people may actively look for trials to join themselves, others might be contacted by their GP or approached in hospital by their consultant or other staff involved in their care.

Participation in a trial is purely voluntary. You are free not to take part or to withdraw at any time, without giving a reason.

Deciding not to take part in a trial, or withdrawing later on, will not affect the care you receive from the NHS.

You need to be satisfied that you have enough information to give your informed consent to participate.

Informed consent

Anyone taking part in a trial must fully understand the objectives of the research, and any risks and potential inconveniences they may experience when taking part.

Informed consent is the process by which a person voluntarily confirms their willingness to participate in a particular trial, after having been informed about all aspects of the trial that are relevant to their decision to participate.

This is documented in a signed and dated informed consent form.

What can I expect if I participate in a trial?

If you decide to participate in a clinical trial you will be monitored carefully during and after your treatment.

You will have regular tests and may be asked some questions about your experience and how you are feeling.

It is important to note that participation in a clinical trial may require you to visit hospital more often than you normally would.

Whilst some trials will cover your expenses for things like travel to hospital appointments, others will not.

You should consider how convenient this will be for you before making a decision whether to participate or not.

Confidentiality

Only members of the research team and your GP will know if you participate in a clinical trial.

Any information collected about you during the course of a trial will be strictly confidential and will be kept in accordance with the Data Protection Act (1998).

The results of a particular trial may be published in a scientific journal and presented at scientific meetings.

However, you will not be identified in any publication of the trial results.

Great Western Hospitals NHS Foundation Trust is a research-active Trust.

Research is essential for the development of new treatments and interventions and the NHS Constitution states that it should be a priority.

Involvement in research can put an organisation at the cutting edge and provide early access to new treatments and interventions, increasing a patient's treatment choice.

It is also an excellent opportunity for staff to learn new skills, and can also benefit the Trust financially.

All clinical staff are encouraged to participate in research. You can be involved in a number of ways:

• Design and carry out your own research project
• Take part in a study on the National Institute of Health Research (NIHR) portfolio
• Take part in commercially funded research
• Become a key contact in your department for research

Sponsored studies

We work with researchers within the Trust to sponsor ‘home grown’ research.

We have staff in post to help you turn your ideas into research.

They will be able to help find and apply for funding, develop all the documents you need, and guide you through the governance processes.

Ethical and Trust approval

All research taking place at the Trust must have the correct ethical and Trust approval in place, together with adequate resources and funding, before commencing.