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PPI in action

See below for examples of two groups actively involving patients and the public in research: 
 

The Northern Ireland Cancer Research Consumer Forum (NICRCF)

Research Advisory Groups in Ankylosing Spondylitis and Rheumatoid Arthritis 

 

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The Northern Ireland Cancer Research Consumer Forum (NICRCF)  

The NICRCF is established to increase personal and public involvement in cancer research across Northern Ireland.  

Members of the Forum will be involved in one or some of the following:
  • Reviewing and advising on clinical trial protocols and patient information leaflets
  • Membership of a research steering group or committee
  • Membership of a Trial Management Group of a specific clinical trial
  • Advising on the best methods and information to raise patient and public awareness about cancer clinical trials available in Northern Ireland
  • Promoting personal and public involvement in cancer research

The Northern Ireland Cancer Research Consumer Forum is co-ordinated by the Northern Ireland Cancer Trials Centre and it will support consumers across the various cancer research groups within Health and Social Care Trusts, Queen’s University Belfast, University of Ulster and beyond.

To download the annual reports of the forum click on the following link: https://www.qub.ac.uk/research-centres/nictc/Gettinginvolved/NICRCFAnnualReport/

To download the Consumer Impact Newsletters of the forum click on the following link: https://www.qub.ac.uk/research-centres/nictc/Gettinginvolved/Newsletter/

If you are interested in getting involvedplease contact Ruth Boyd with your name, address and contact telephone and/or email details.

The members of the Forum meet together at least four times a year. Training and support is available to members. Anyone interested is encouraged to attend a meeting to hear more about what is involved, to help you decide if you want to apply. 

Ruth Boyd, Cancer Research UK Senior Nurse
NICTC, East Podium,C-Floor
Belfast City Hospital, Lisburn Road
Belfast BT9 7AB
Tel: 028 9063 8468
 

CLINICAL TRIALS MATTER

During early 2015 the Health Research Board - Trials Methodology Research Network (HRB-TMRN) in association with The Irish Times, ran an article writing competition on clinical trials.

The winners of the competition were accounced on International Clinical Trials Day 20th May 2015.

We are delighted to let you know that Kate Burns, a NI Cancer Research Consumer Forum member won 2nd place in the competition.  We wish to congratulate Kate and let you read her inspiring article here as well as the other prize winning essays.

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Research Advisory Groups in Ankylosing Spondylitis and Rheumatoid Arthritis 

Dawn Small, a research nurse in the Western Health and Social Care Trust, is actively encouraging patients, carers and the wider public to participate in influencing the research cycle to ultimately bring benefit to patient outcomes.

Dawn and her colleagues in the The Joint and Spine Research team have set up 2 Research Advisory Groups in the areas of Ankylosing Spondylitis and Rheumatoid Arthritis with people who attended an information evening held last month.

In these groups people with an experience of Ankylosing Spondylitis and Rheumatoid Arthritis will be able to share their personal insight about the conditions with researchers.

Dr Philip Gardiner, Western Trust Consultant Rheumatologist said: “We are delighted with the excellent feedback we have received from the patients and their willingness to join our research advisory groups. The Research groups are made up of research staff and patients with an experience of the disease who want to be actively involved in the research process. The additional knowledge we gain from patient’s experiences can help challenge assumptions, identify problems and help come up with solutions to ultimately reflect real patient needs.”

 
Download a poster about the Joint and Spine Research Team in the Western Health and Social Care Trust.