Could you be an ambassador for research?

Patient Research Ambassadors needed to promote health research from a patient point of view

We have teamed up with colleagues at the NIHR Clinical Research Network (CRN) to support their Patient Research Ambassador (PRA) initiative.

The Network is looking for patients, carers, and members of the public who have taken part in research and who are passionate about it.

The Ambassadors will help improve how local people across the North Thames patch find out about and participate in clinical research and also help to increase awareness of the importance of supporting clinical research. The PRAs will play their part in ensuring research is patient and public focussed.

Examples of the type of work PRAs do are below – 

Full training and support will be available. As well as a chance to learn new skills and improve how research is planned and carried out in your area you will be part of a network of PRAs.

To find out more contact CRN North Thames patient and public involvement manager Christine Menzies by emailing christine.menzies@nihr.ac.uk or calling 0207 679 9763

You can read a role description here..

Read tne full 10 things you can do to promote health research document here

Using Virtual Simulation to Improve Endovascular Aneurysm Repair: Patient Advisor

Background

A common surgical treatment for abdominal aortic aneurysm (AAA) is called Endovascular Aneurysm Repair, or “EVAR”. EVAR uses wires and catheters to insert a stent graft inside the aorta to divert blood away from the aneurysm. EVAR has good short term outcomes, including low complication rates during surgery and shortly after. However, there is a need to improve the long-term success of EVAR, which frequently leads to complications after approximately 5 years. We plan to develop a virtual computer modelling system that can predict the likelihood of success or failure of an EVAR graft, tailored to the individual patient. This tool will be useful for planning EVAR, especially in time-constrained situations like emergency AAA treatment, and for training vascular specialists to improve their skills.

We are preparing a grant application to carry out research on this topic. This research will

  • explore the patient experience of undergoing EVAR and associated follow-up;
  • explore how clinicians who carry out EVAR make decisions around the procedure
  • seek to understand how a computational modelling system can be designed to best meet the needs of key stakeholders (e.g., clinicians and device manufacturers) and improve patient care

We are inviting a patient representative who has previously undergone EVAR to repair an AAA to join our team and shape this work.

Though we recognise the value of individual experience of health and care, we hope you will be able to raise a broader range of viewpoints beyond your own personal experience.

Working alongside our research facilitator, and team of clinicians and researchers, your involvement will ensure that the patient perspective is at the heart of what we do.

Time commitment:                

We ask for a time commitment of approximately 1 hour per week from start until then. Most of this time will involve checking documents or emails from your home, and is flexible. You will be asked to attend three 60-90 minute meetings in September, October and November 2018.

Venue:                                     

Meetings will be typically held at a Central London location.

Remuneration and Expenses:

Out-of-pocket expenses for travel. A stipend of £30 per meeting. Reimbursement for review of documents subject to the size and scale of the forms (£15 for brief documents; £30 for full grant application).

Supported by:                        

The CLAHRC Research and Implementation Facilitator and Patient and Public Involvement (PPI) officer

Tenure of Office:                     

Through to December 2018 initially with an opportunity to join the research team if the grant bid is successful and/or to become involved in a related research project.

Role description:

The patient advisor will be required to contribute by:

  • Share your ideas, from your own experience, to help prepare a grant application to conduct this research in the UK. If our grant application is successful we will invite you to be part of the research team.
  • Prepare for and attend meetings in central London to discuss plans as a team, or give feedback via a phone call or email
  • Comment on research documents, such as scripts and questionnaires we plan to use to interview patient participants in the research

Role requirements

  • Diagnosis of abdominal aortic aneurysm and previous endovascular aneurysm repair (EVAR)
  • Knowledge and understanding of patient, public and service user perspectives, with an ability to raise a wider range of viewpoints beyond your own personal experience
  • Good communication skills with an ability to listen to others and confidently and constructively express your own views
  • An ability to work effectively and positively as part of a team
  • Assisting the research team in bringing an understanding of the viewpoints of patients to this work
  • Respecting any requests for confidentiality and declaring any conflicts of interest if they arise

Further Opportunities

The patient advisor will have the chance to

  • Get involved in our research grant application
  • Help to steer the research project if the grant application is successful
  • Have input to help direct our wider research plans and ideas in this area
  • Meet and work with world-class researchers in some of the UK’s most prestigious education institutions

Attendance fees and expenses

A stipend for preparation and attendance at meetings of £30 and for review of key documents (£15 or £30 subject to the size of the forms) will be paid to the role-holder. Travel expenses to and from meetings will also be reimbursed.  Those in receipt of state benefits and allowances are advised to contact the Benefits Advice Service for involvement in research. Contact INVOLVE by email: benefits@invo.org.uk or phone 02380 651088 and quote NIHR CLAHRC North Thames.

Support to Panel members

All members will be supported by an experienced Patient and Public Involvement Officer and the project’s Research & Implementation Facilitator. The role-holder will be expected to identify any personal learning and development needs with the CLAHRC PPI Officer either in advance of formally taking up the role or during their tenure. Advice and help will also be available from the CLAHRC core team.

Recruitment and Selection Process

NIHR CLAHRC is committed to diversity of lay representation and applications are encouraged from individuals based throughout the North Thames region, from all backgrounds, and all age groups (from sixteen upwards). Interested candidates will be asked to complete a short supporting statement.

Contact details

Melissa N Galea Holmes

NIHR CLAHRC North Thames Research & Implementation Facilitator

UCL Department of Applied Health Research

1‐19 Torrington Place, London WC1E 7HB, Rm 112

Postal Address: UCL, Gower Street, London WC1E 6BT

T: +44 (0)20 3108 3269 (Ext. 53237)

E: melissa.galea‐holmes@ucl.ac.uk or stephanie.hume@ucl.ac.uk