New Volunteer Opportunity to Support the Management of a Research Study

New volunteer opportunity to support the management of a research study

Role Title: ‘Patient’ Representative on Trial Steering Group (TSG) for funded research study: Assessment and Treatment of patients with Amblyopia (lazy eye) using interactive binocular computer games (IBiT+)

Grade: Volunteer (non salaried) but entitled to claim a £75 ‘Thank you’ payment and reasonable expenses per meeting

Reporting To: Jane Flewitt, Patient and Public Involvement and Engagement Facilitator, Research and Innovation

Accountable To: TSG

Commitment: Three meetings over the course of 12 months (approximately one meeting every four months), with the possibility of an additional meeting at approximately 18 months.

Background:

Context:

Around one child in fifty has a lazy eye, where the eye is structurally normal but the vision fails to develop correctly. Around half of these children also have a squint (strabismus) where each eye has a different direction of gaze.

This condition is most often detected at age 2 – 4 years of age and the standard treatment is to cover the good eye (patching) so as to encourage use of the lazy eye and then to consider corrective surgery for any squint that may be present. It requires up to 400 hours of patching to get maximum visual improvement but many are still left with some impairment and, in particular, poor depth perception. In addition, wearing a patch is uncomfortable, impairs the child’s vision and may make him/her a target for bullying.

Project Details:

We have developed a treatment for amblyopia (lazy eye) which has shown improvements in vision with only three hours of treatment and which is fun to undertake (I-BiTTM System). The current system is hospital based and we wish to modify it for home use while including three further improvements.

First, many patients with a lazy eye also have a squint and, in this group, the treatment has a risk of causing double vision. We wish to incorporate eye-tracking technology to be able to correct for the presence of squint during treatment. Secondly, this system would allow the treatment to be modified according to the response. Third, we wish to adapt more games for the

I-BiTTM System both to avoid the patient/player becoming bored and also to increase the therapeutic potential by adding games that require simultaneous perception in order to play so as not only to improve visual acuity but also to stimulate the development of true binocular vision with depth perception.

This project has been granted funding from the National Institute of Health Research (NIHR).

The Trial Steering Group (TSG) is looking for a dynamic and confident ‘Patient’ Representative to give input to the project from a patient/public perspective. Someone with experience of Amblyopia, either as a patient, carer/parent, or ex professional would be preferred.

The successful candidate will be an important member of the TSG and will be required to attend three – four meetings over a 12 – 18 month period to ensure that the project is successfully delivered.

This position will provide an opportunity to assist in delivering a first class project with the potential to change the future of healthcare.

Role Summary:

To provide the TSG with guidance on the delivery of this project during set up and key milestones, ensuring consistency with the needs and views of patients, carers and the wider community.

To assist the TSG in understanding the perspectives of patients and public, such as identifying other potential opportunities for patients and public to be actively involved at further points in the life of the study.

Values and Behaviours:

NUH has a set of values and behaviours to improve the experience for our patients and our staff (We are here for you). This means that in undertaking this role the post holder is expected at all times to behave is a way that demonstrates commitment to the delivery of thoughtful patient care and continuous improvement as detailed in the table below.

Thoughtful Patient Care / Continuous Improvement
Caring and helpful
·  Polite, respect individuals, thoughtful, welcoming
·  Helpful, kind, supportive, don’t wait to be asked
·  Listening, informing, communicating / Accountable and reliable
·  Reliable and happy to be measured
·  Appreciative of the contribution of others
·  Effective and supportive team-working
Safe and vigilant
·  Clean hands and hospital so patients are safe
·  Professional, ensure patients feel safe
·  Honest, will speak up if needed to stay safe / Best use of time & resources
·  Simplify processes, to find more time to care
·  Eliminate waste, investing for patients
·  Making best use of every pound we spend
Clinically excellent
·  Best outcomes through evidence-led clinical care
·  Compassionate, gentle, see whole person
·  Value patients’ time to minimise waiting / Innovation for patients
·  Empowerment to act on patient feedback
·  Improvement led by research and evidence
·  Teaching the next generation

Key Role Requirements:

We are looking to appoint an individual with experience in either ophthalmology or Amblyopia or have experience in working with healthcare projects previously and are keen to bring this experience to the project, developing their experience in line with the projects aims. In general, the role will require the following qualities:

1.  An interest in introducing change and benefits through published/documented best practices.

2.  The ability to understand the broader range of patient/public perspectives beyond personal experience, and to use that to inform the work of the TSG.

3.  Good communication skills, the ability to listen to others, summarise issues and express views objectively with a constructive purpose.

4.  Experience of working as a member of a team and with a broad range of people.

5.  Time to commit to the work of the team with some flexibility as the project progresses through its stages in order to attend quarterly meetings.

6.  To contribute to project communications as appropriate – e.g. patient notices regarding progress via project newsletters etc.

7.  To attend additional meetings/events as discussed and agreed.

8.  To respect and maintain confidentiality at all times (you may be asked to sign a Confidentiality Agreement.

9.  To set aside appropriate time for any additional background reading in preparation of taking up this role.

10.  Declare any conflicts of interest where appropriate.

11.  Undertake training as necessary for the role. Identify and personal needs for training or support.

General Duties:

In addition to the key job responsibilities detailed in this job description all employees at Nottingham University Hospitals NHS Trust are expected to comply with the general duties detailed below:

Infection Control

To ensure adherence to the Trust’s standards of cleanliness, hygiene and infection control when in clinical areas.

Safeguarding children, young people and vulnerable adults

Nottingham University Hospitals is committed to safeguarding and promoting the welfare of children, young people and vulnerable adults. All staff and volunteers are therefore expected to behave in such a way that supports this commitment.

Information Governance

All staff have an individual responsibility for creating accurate records of their work and for making entries into and managing all NHS records effectively in line with the Health Record Keeping Policy and other Health Records and Corporate Records Management policies and procedures in order to meet the Trust’s legal, regulatory and accountability requirements.

Health and Safety

To take reasonable care to prevent injury to themselves or others who may be affected by their acts or omissions.

To co-operate fully in discharging the Trust policies and procedures with regard to health and safety matters.

To immediately report to the Trust any shortcomings in health and safety procedures and practice.

To report any accidents or dangerous incidents to their immediate manager and safety representative as early as possible, and to submit a completed accident/incident form.

To use protective clothing and equipment where provided.

Whilst the aim of the Trust is to promote a co-operative and constructive view of health and safety concerns in the organisation, all staff must be aware that a wilful or irresponsible disregard for safety matters may give rise to disciplinary proceedings.

General Policies Procedures and Practices

To comply with all Trust policies, procedures and practices under the guidance of the group, where applicable.

Role Revision:

This role description should be regarded as a guide to the duties required and is not definitive or restrictive in any way. The duties of the post may be varied from time to time in response to changing circumstances.

Further information and to apply:

If you are interested in helping us with our research, then please contact Jane Flewitt, Patient and Public Involvement and Engagement Facilitator in the first instance, by telephone: 0115 9249924 ext 70660 or by email to or complete the attached form.

The deadline for initial enquiries is 14th July 2016.

This document was written on 5th July 2016.

I-BiT+: Assessment and Treatment of patients with Amblyopia (lazy eye) using interactive binocular computer games

If you are interested in helping us to develop our research, then please complete this form and forward it to Jane Flewitt to the postal address at the end of the form.

For office use only

Date submitted
Applicant’s details
Title *
Surname *
Forename *
Street *
Town/City *
Post code *
Email address *
Telephone *
Mobile *
* We would like to keep your details on a database
Please indicate which of the following statements applies to you by ticking the relevant box:
I am happy for my details to be kept on your database
I am not happy for my details to be kept on your database
Please answer the following questions so we can learn more about you: / Yes / No
Did you have ‘lazy eye’ as a child?
Are you the parent of someone with ‘lazy eye’?
Do you have access to email and the internet?
Can you use Microsoft Office Word?
In the box below, you can tell us about any other experience or skills you might have that could help us with our research.
Please also let us know any circumstances that we should consider - unable to travel, caring responsibilities etc (please continue on a separate sheet if necessary).

Please forward your completed form to Jane Flewitt using the following email address: or by post:

Jane Flewitt,

PPI/E Facilitator, Research and Innovation

C Floor South Block

Nottingham University Hospitals NHS Trust,

Queen’s Medical Centre

Derby Road, Nottingham NG7 2UH

Thank you.