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Are You Part of a Local Diabetes Support Group?
Does your support group want to know more about the Diabetes Research Network? If so, let us know - we will be happy to have someone attend a meeting to talk about the network or answer your questions. Just call or drop a line to the coordinating centre - contact us.
Become a Patient Advocate and Get Involved
We are now recruiting Patient Advocates to help guide our activities these are people affected by diabetes who are willing to share their experience and perspective with our advisory groups and reference panels. You do not need any particular expertise to take part other than knowledge of what it is like to be affected by diabetes.
Useful Links
NHS Choices
NHS Choices website has been developed to help you make choices about your health, from lifestyle decisions about things like smoking, drinking and exercise, through to the practical aspects of finding and using NHS services when you need them.
People in Research
People in Research aims to help members of the public make contact with organisations that want to actively involve people in clinical research. It has been developed by the UK Clinical Research Collaboration, INVOLVE and others.
Patient and Public Involvement in UKCRC Advisory Groups
The UK Clinical Research Collaboration (UKCRC) is looking to appoint patient/public members to it's advisory groups.
Sense about Science
Sense About Science has produced a guide to help people to query the status of science and research reported in the media. Get the guide by clicking the e-button below (opens in a new window).
Patients
How can I get involved with the Diabetes Research Network?
The Diabetes Research Network plans to improve the coordination and quality of research into Type 1 and Type 2 diabetes by:
- creating a more effective research environment to improve diabetes care
- ensuring that research remains relevant to the needs of those affected by diabetes.
To achieve these goals we will need your input - a patient perspective is vital to inform and help guide our decisions.
There will be a number of ways in which you can become part of the Diabetes Research Network’s activities.
- by participating in our information-gathering programme, answering an occasional questionnaire or survey circulated by the Network
- by participating in one of the clinical trials or research studies adopted by the Network
- by becoming a Patient Advocate, putting forward a perspective from the point of view of the patient – for more information, please refer to The Patient Advocate section below.
At this stage, we are establishing a directory of those who have expressed an interest in participating in the Network’s activities. If you would like to be part of this first wave of participants, or if you just want to be kept informed about the Network’s conduct, please contact us at the address or numbers below with your name, address and contact details. This will enable us to keep you informed about progress and of opportunities to participate in the Network, as they arise. Providing your details in this way does not commit you to any further action or participation.
The Network’s key principles for patient and public involvement in its activities are listed below.
It is critical for the Network to have the views of people affected by diabetes - and only with your help will we be able to improve the methods of care, treatment and prevention of diabetes across the UK.
We are committed to protecting your privacy and security. We will only use the information you may send to us to contact you about the conduct and performance of the Diabetes Research Network. We will never wilfully disclose personal information about you to any third party without first receiving your permission to do so, or unless we are under legal obligation to do so. We may include literature from other organisations that we consider may be of interest to you within our own distributed materials.
Patient and Public Liaison Officer
UK Diabetes Research Network
ICCH Building
59-61 North Wharf Road
London
W2 1LA
Telephone: 0207 594 1796
Fax: 0207 594 3392
Email: m.lodemore@imperial.ac.uk
The Patient Advocate
The Patient Advocate is a person with diabetes, or a family member or carer of someone with diabetes, who participates in one or more of the Diabetes Research Network’s committees or advisory groups. This may be a central committee, organised by the Network’s Coordinating Centre, or one connected to a Local Research Network centre in your region. There will be a number of such committees and advisory groups operating within the Network’s structure, each working towards the common goals of improving the care and treatment of those with diabetes by encouraging involvement in research.
The Network will also establish Reference Panels to incorporate the perspectives of those affected by diabetes on various activities, such as the design and content of newsletters, public information literature and website pages. Members of these Reference Panels will share their views by post or by e-mail, rather than by attending meetings, which may suit those who prefer not to travel or who have limited available time.
The role of the Patient Advocate is to put forward a perspective from the point of view of someone with experience of diabetes.
What Difference Could I Make?
Patient Advocates will play a vital role within the Diabetes Research Network, ensuring that our focus remains on ways of improving the methods of diagnosis, care, treatment and prevention of diabetes. As a Patient Advocate, your perspective will:
- Help to set research priorities
- Help to develop research studies and collaborations
- Help to develop patient information literature
What Support Will I Get?
Information packs about becoming involved in research and taking part in the Network’s activities will be supplied before participation begins. To ensure that the information provided is current and relevant to the needs of the Patient Advocate, the Network has formed close links with INVOLVE (formerly Consumers in NHS Research).
- Training opportunities will be available throughout the period of participation
- A scientific mentor will be available as a technical advisor while preparing for and participating in meetings.
If you are interested in helping the Diabetes Research Network by becoming a Patient Advocate, please contact us using the email contact form above or at the address or numbers above.
Principles of Patient and Public Involvement
The Diabetes Research Network will ensure that:
- The views and perspectives of people with diabetes, their families and carers, are fully integrated into the strategy of the Network
- The views and perspectives of a broad range of people with diabetes, their families and carers, are incorporated into the research process
- The involvement of people with diabetes, their families and carers, are included at all stages and levels of the Network’s research activities
- The views and perspectives of people with diabetes, their families and carers, are treated with respect at all times
- There is a commitment to review and improve patient and public involvement in the Network on a regular basis.
Ensuring that these core principles are upheld is the main remit of the Patient and Public Liaison Officer, a full-time post within the Diabetes Research Network Coordinating Centre.
The Patient and Public Liaison Officer will also ensure that:
- The timing and venue of meetings involving people with diabetes, their families and carers, will take into account their needs and preferences
- The roles of people with diabetes, their families and carers, are clearly defined within the structure of the Network
- Training to support the participation of people with diabetes, their families and carers, will be provided throughout the period of participation
- Mentoring as a means of technical support will be provided for people with diabetes, their families and carers, while preparing for and participating in meetings
- Information about the activities of the Network will be made available to all people with diabetes, their families and carers.