NIHR GOSH BRC Virtual Patient and Public Involvement and Engagement call

A scientist interacts with young people at the BRC Family Fun Day 2017

All staff at GOSH and the UCL Great Ormond Street Institute of Child Health (ICH) are invited to apply for the NIHR GOSH Biomedical Research Centre (BRC) Patient Public Involvement/Engagement (PPI/E) virtual Small Grants Scheme.

Funding is available to support a range of projects that will enable patients and the public to shape or become better informed about research at GOSH. The scheme is specifically aimed at supporting staff to actively involve and/or engage patients and the public in translational research aligning with the activity of existing GOSH BRC Research Themes.

This year in line with future GOSH BRC PPI/E Strategy development we are allocating our funding for virtual (online) PPIE activities. This is also in response to the uncertainty around hosting in person activities due to COVID-19 restrictions/developments.

Why is it important?

High quality research depends on listening to the voices of children and young people, as well as their families and carers, taking account of their experiences, priorities and perspectives. This process of joint working is vital to how we design and carry out our research. The NIHR GOSH BRC is offering this funding as part of its commitment to patient and public involvement/engagement in research.

Who can apply?

All staff from GOSH or ICH. You may be a nurse, AHP, doctor, PhD student, administrator or researcher: any member of staff; clinical or non-clinical. If you have a good idea on how to virtually involve or engage patients and the public in research and would like some funding to support this, please apply. You do not need to have previous links with the BRC to be eligible to apply.

How much money is available?

The NIHR GOSH BRC has £5,000 in funding to be split across a number of projects. Below are some guidelines for consideration when planning and costing your application:

  • £250- £500 - Part funding or funding a small activity
  • £400 - £500 - Starter activities
  • £500 - £1,000 - More detailed long term planned activity
  • £1,000 - £2,000 - Innovation in Patient and Public Involvement & Engagement

Any project funded through this call but must be fully invoiced by 28 February 2022. There will be no mechanisms for GOSH BRC to be able to pay any invoices after this date. Therefore, please plan your projects with this in mind and the BRC will be in contact through the year to ensure you are on track with your plans.

Application process

  • You must read the Guidance Notes and Application Form for more on eligibility criteria and the scope of the call. Please complete the Application Form in the document and submit to BRC@gosh.nhs.uk by Thursday 24 June 2021 (midnight)
  • Awardees announced: by Friday 30 July 2021.

Contact details

  • Submit applications to: BRC@gosh.nhs.uk
  • For queries regarding your application contact the Patient and Public Involvement/Engagement Lead for research, Deirdre Leyden at: research.ppi@gosh.nhs.uk

We are delighted to announce the previous grant awardees below:

These projects will progress their work from 2018, with impact and learning shared by March 2021.

NameRoleProject titleAward totalJames EvansAHPA mixed methods study exploring child and parent perceptions of nutrition support and nutritional outcomes, in paediatric BMT£400

Kate Fifield, Ellie Kerry and Maya Patel

Research Associates

The Launch of The Lucy Booth: A Drop-in Centre for Mental Health and Psychological Wellbeing£500

Emily Robinson and Elizabeth Rosser

Research Coordinator and Research Fellow

Patient engagement event: “I am what I eat: the science of food and poo”£800Alpha Umaru BarrieNurseA mixed method exploration of parents’ and children’s experiences with subcutaneous injections of monoclonal antibodies as management for haemophilia£500Polly LivermoreNurseJuvenile Dermatomyositis Family Day for the South East of England£600June HemsleyNurseA half day one-off focus group meeting engaging patients, parent carers , and health professionals to help inform the development of a research grant proposal exploring breathlessness in children and young people receiving palliative care£800

Elaine Cloutman-Green, Nicola Baldwin, Amy Sutton, Fionnuala Wilkins and Laura Walsh
Chugh, Lucy Pepper

Healthcare ScientistStories from Neverland£2,200Katy Pike and Joanne MilesDoctor and NurseChildren’s and parents’ perspectives on the use of remote monitoring in paediatric asthma management£6,820

NameRoleProject titleAward totalRobert NashConsultantChild and parental views of options available for hearing loss in unilateral microtia£2,000

Graeme O'Connor, Lucy Pepper, Hortensia Gimeno, Lucy Alderson, Gillian Waite

AHP Research Facilitator Group

Parents views on AHP care delivery in an intensive care setting£523

Dr Stephen D Marks, Dr Ji Soo Kim

Consultat, Registrar

Designing child, young person and family friendly research materials for studying psychosocial barriers to kidney transplantation in children£523Ms Deepti ChughPhysiotherapistPPI activities to explore child, parent and physiotherapist perceptions of physiotherapy rehabilitation after Selective Dorsal Rhizotomy in children with cerebral palsy£400Ella FieldResearch NursePPI E focus group to identify research priorities for children and families affected by arrhythmogenic cardiomyopathy£850Dr Kristina SoonPrincipal Clinical PsychologistRare Disease Cohorts: Patients with Dystrophic and Junctional Epidermolysis Bullosa and Chronic Granulomatous Disease will be part of the target population£670

Dr Hortensia Gimeno, Dr Lucy Alderson, Gill Waite, Deepti
Chugh, Lucy Pepper

AHP Research FacilitatorsExploring family and children’s views of acute rehabilitation provision at a tertiary hospital£417Dr Jane GilmourConsultant Clinical Psychologist (GOSH) and Snr Teaching Fellow
(ICH)Telling it, like it iS
Adolescents with Tourette’s’ Syndrome informing peers about research in the National Specialist Tourette’s Syndrome Clinic (NSTSC), GOSH£2,750Dr Claire SmithLecturer & Lead of GOSICH EDI Community Focus GroupThe GOSICH Future Researchers Christmas Lecture£500Dr Samantha Chan, Dr Amy McTagueUCL Chadburn lecturer/ ST7 in Paediatric Neurology
GOSH BRC Catalyst Fellow/Honorary Consultant in Paediatric NeurologyEpilepsy – Carers Uniting with REsearchers (E-CURE)£400Dr Natasha SchoelerResearch DieticianAssessing patient/carer experience within the GOSH Ketogenic Diet Neurology service£1,200Dr Ameenat Lola SoleboNIHR Clinician Scientist, Honorary Consultant OphthalmologistShow, don’t tell! Using animation to engage children and young people in research£1,167Dr Nandaki KeshavanClinical Research Training FellowPyruvate Dehydrogenase Complex (PDC) Deficiency Natural History Study£800Dr Gwyneth DaviesNIHR Clinical Trials Fellow / Clinical lecturerIntegrating data-driven approaches into display and interpretation of clinical data for children and young people with Cystic Fibrosis at GOSH: perspectives on the ‘what, when and how’£830

NameRoleProject titleAward totalKathryn FordRegistrarCharting Hurdles in Anorectal Malformations: a PPIE focus group event to identify what matters£995

Gemma Knight

Speech & Language Therapist

Perspectives of parents and CYP on the research priorities for children with cochlear implants£700

Abraham Cherian

Consultant Urologist

'Cloaca family' open day and research forum£1,500Nicola BurnettPhysioEvaluation and development of the new neuromuscular clinical and physiotherapy provision for non-ambulant boys and your men with Duchenne Muscular Dystrophy£550Rhiannon HalfpennySpeech & Language TherapistThe feasibility of using swallowing exercises in adolescents with swallowing impairments: A co-design project£459Lucy PepperSenior Research FacilitatorIdentifying the views and priorities of parents whose children have very early developmental skills and attend Neurodisability clinics at GOSH for assessment£723

Claudio Capelli

Senior Research AssociateParticipated design of a virtual reality app to benefit patients with cardiovascular disease£500