Research is a key part of health care development. It aims to find out the causes of human illness and how it can be treated or prevented. Thousands of people each year agree to take part in research studies, contributing to the testing of potential new treatments, diagnostic aids or other developments, before they are adopted across the National Health Service. Some research compares two treatments, for example, to assess which is more effective.

You may be invited to participate in research whilst under our care. In addition to the studies already mentioned, you may be asked to complete a questionnaire about your condition or even provide some additional samples of blood or tissue for use in research studies.

If you are invited to take part in a research study, the study will be explained to you by a healthcare professional suitably trained in research and you will also be given written information explaining the following:

• What the study is
• Why it is needed
• What you will need to do if you decide to participate
• The possible risks and benefits to you
• How your identity will be protected and details kept anonymous
• Who will have access to the information collected
• Arrangements in place in case of any research related injury
• Anticipated expenses (if applicable)

Before agreeing to participate in a study, ensure that you fully understand all the information provided. Ask as may questions as you need to and discuss it with friends and family before making your decision.

If you decide to go ahead, you will normally need to sign a consent form to confirm that you wish to be involved.

Remember that you are not obliged to take part in any research. If you decide that you would rather not take part, this will not affect your care. If you decide to take part but subsequently decide you no longer wish to continue, you can leave the study at any time.

The Research Governance Framework for Health and Social Care (Dept of Health, Second edition, 2005) lays out the principles of good governance to be applied to all research studies carried out within, or in collaboration with, the NHS. 

The framework includes the following key sentence: “The dignity, rights, safety and well-being of participants must be the primary consideration in any research study.” (Section 2.2.1 p.7)

Public Involvement in Research
Members of the public can often bring a fresh perspective to research. There have been occasions when members of the public have identified areas of research that have not previously been considered by those close to the research.

Public involvement in research includes:

• being able to ensure that important issues are identified and providing a patient-perspective on care and research
• ensuring that money and resources are effectively used on relevant research
• ensuring that new technologies are acceptable to the public
• Encouraging and supporting patients to participate in research
• disseminating results of research and supporting the implementation of research outcomes for patient benefit
• ensuring that the changes are implemented.

If you would like to become involved with research, the INVOLVE website can provide more information on this.

INVOLVE have produced a Public Information Pack (PIP) which comprises 4 booklets, for members of the public interested in becoming involved in research. (Include links to booklets here)

Useful Contacts
“INVOLVE is a national advisory group, funded by the National Institute for Health Research (NIHR).  Its role is to support and promote active public involvement in NHS, public health and social care research.”

INVOLVE Support Unit
Wessex House
Upper Market Street
Eastleigh
Hampshire
SO50 9FD

Telephone: 023 8065 1088
Email: admin@invo.org.uk

Folk.us brings the world of research and researching to people who use health or social care services across Devon.

People in Research aims to help members of the public make contact with organisations which want actively to involve people in clinical research.

UK Clinical Research Collaboration
20 Park Crescent
London
W1B 1AL

Email: peopleinresearch@ukcrc.org

The UK Clinical Research Collaboration site gives information on public involvement in research and booklets can be downloaded giving further information.

If You Have Concerns while on a Study
Whilst it is something we hope will not happen, if you have concerns about any aspect of research please speak to the researchers using the contact details you will have been provided with.  Alternatively, you may wish to contact the hospital's Patient Advice and Liaison Service (PALS).

PALS offers support, information and assistance to patients, relatives and visitors and will:

• Provide information about hospital services.
• Offer advice on where to go to get health information.
• Help with problems that you haven’t been able to sort out with staff on a ward or in a clinic.
• If you want to make a complaint - advise you how to do so.
• Tell you about independent organisations that can help you with a complaint.
• Listen to your views on how we can improve our services, and pass this on to the appropriate people for action.

PALS can be contacted at:

Patient Advice & Liaison Service
Level 7
Derriford Hospital
Plymouth 
PL6 8DH

Email: plh-tr.PALS@nhs.net