Our joint strategy for engagement and involvement with patients and the public

Our vision is to foster active and sustained partnerships between researchers, patients and the public, and partner organisations to further improve the quality and impact of the research we deliver.

We will:

• expand and increase equitable opportunities for Patient and Public Involvement and Engagement (PPIE) to be embedded within the organisation and inform all stages and aspects of research design, delivery and strategy through to clinical service implementation.
• continue to develop creative and innovative ways to ensure sustained engagement with our PPIE community with a particular focus on children and young people.

Delivering high quality research depends on listening to the voices of children and young people, their families and carers, and the public, taking account of their experiences, priorities, perspectives and needs. This collaboration is vital to how we design and carry out our research and translate findings to clinical practice.

Meaningful PPIE activities take time, trust, commitment, and refinement. Our approach to PPIE and the way we work, will therefore continually evolve.

Reflecting our vision, this strategy sets out our purpose, aims and objectives to continue building a culture in our PPIE work which is collaborative, innovative, reflective, and open to positive change, and it outlines how we will evaluate our patient and public involvement and engagement activities.

The co-development of this strategy has been:

• informed through initial discussions with our committed PPIE community – (both new and established) patients, the public, researchers, and clinicians.
• developed to enable us to continue to progress on some existing PPIE work streams and develop new ones.

This strategy is a live document, which will be revised and updated to reflect our progress, any new developments or challenges, and our evolving relationship with our patient and public community and partners.

Our refreshed strategy has been developed and will be delivered in partnership between NIHR GOSH Biomedical Research Centre (BRC) and NIHR GOSH Clinical Research Facility (CRF).

This strategy will apply to research at GOSH and UCL Great Ormond Street Institute of Child Health (UCL GOS ICH), and best PPIE practices developed will be shared across our PEI Partners.

It is built on and aligns with the NIHR’s PPIE Strategy, ‘Going the Extra Mile’; areas of other related GOSH strategies including GOSH Research Equity, Diversity and Inclusion (EDI); GOSH BRC Career Development Academy (CDA), GOSH Research Communications; ‘Being Seen and Heard’ Equality, Diversity and Inclusion’; and the GOSH Charity Research Strategy.

Over the past five years we made significant progress against the goals we set in our 2018-2022 PPIE and Patient Experience in Research Strategy. This has helped to strengthen our understanding of how PPIE activities should be embedded throughout our research programmes.

Our existing PPIE activity includes:

• well-established PPIE Research Advisory Groups including our Young Person’s Advisory Group (YPAG) and our Parent and Carer’s Advisory Group (PCAG). These have steadily matured and developed over the past few years and offer more opportunities for members to be involved in research projects and collaborations.
• a regular programme of PPIE activity based around annual events such as Rare Disease Day, International Clinical Trials Day, our NIHR GOSH BRC Showcase, and education events including the work experience weeks for older school pupils, and visits to primary schools.
• opportunities for public and patient involvement in NIHR GOSH BRC lay panels for funding reviews, to help improve the quality of plain English summaries and PPIE plans in grant applications.
• bespoke PPIE best practice advice to researchers on a one-to-one basis to support PPIE activity aligned with individual research projects and funding applications.

In March 2020, in response to the COVID-19 pandemic, our PPIE activity moved online. Advisory groups and events took place on Zoom, and digital outreach opportunities, allowed us to offer more diverse and inclusive PPIE activities not constrained by times or locations. Post COVID, while face-to-face PPIE activities have returned, we are building on our learnings and embracing the Trust’s ‘research hospital without walls’ initiatives in our PPIE by offering hybrid (online and face-to-face) events.

Whilst the NIHR GOSH BRC and CRF have worked collaboratively over the past decade to deliver joint PPIE initiatives, of which we have many examples of existing best practice in PPIE at GOSH, the level of maturity of specific activity differs across the NIHR GOSH BRC and CRF. In this refreshed joint strategy, we look to continue our joint activities whilst further developing award specific activities aligning to both NIHR GOSH BRC & CRF strengths. The CRF will develop more inclusive initiatives that involve and engage CRF specific users (patients, families and staff). The NIHR GOSH BRC will build upon the diverse range of established PPIE activities and helped researchers with strong PPIE interests demonstrate excellent PPIE within their research programmes. As such we recognise that the maturity levels across the NIHR GOSH BRC & CRF activity will be at different stages.

Despite examples of excellence, the levels of PPIE knowledge and skills across all research is very variable, meaning researcher’s ability to undertake meaningful PPIE activity and communicate research stories effectively to general audiences is inconsistent. In addition, with more than half of our patient community coming from outside London, we could do more to increase both the geographical reach of, and the diversity of those taking part in, our PPIE activities. Finally, more resources will need to be secured through collaboration with external stakeholders, for example the Genomic Laboratory Hub, to continue to develop the wide range of PPIE activities that we believe are essential to ensuring the success of our wider research portfolio.

Building on our established PPIE activity, strong collaborative relationships, and learnings from the past five years, our ambitions are:

• to expand and increase equitable opportunities for PPIE across all aspects of our work, utilising a hybrid delivery of our activities, developing training and increasing mentorship for researchers and patient and public members.
• to continue developing our partnerships with internal/external stakeholders, increasing the local, national and international capacity and reach of our PPIE activities, and diversifying to ensure voices from relevant condition-specific charities, patient groups and organisations, and the general public, are able to influence our research.
• to increase opportunities for public members to be involved in our decision-making processes.
• to secure increased financial support for PPIE activity from external partners.
• to ensure PPIE activity is embedded consistently across NIHR GOSH BRC research themes, the CRF, and the wider GOSH and UCL GOS ICH community, reflecting the GOSH ‘Intelligent Research Hospital’ vision to provide a high-quality research environment to all patients.

Success in these ambitions would ensure we are able to scale-up our successful PPIE methods and infrastructure, diversify our approaches and audiences, and develop new activities. This would further improve the quality and impact of the research we deliver for our patients, and ensure our PPIE community continue to develop, feel connected to the organisation, and are empowered to make a difference.

Our joint 2023-2027 PPIE Strategy priorities have been informed by initial discussions with stakeholder groups. Our priorities will evolve through time as stakeholder consultations continue, and we build on our successes and learn from the challenges we face.

Initial emerging priorities have been developed into six strategic strands, which set out the goals shown below, to enable us to achieve our vision. These strands are aligned to best practice in PPIE as set out in the six themes in the NIHR UK Standards for Public Involvement.

Strand 1: Involvement and engagement

• to continue building creative and flexible ways to widen access and develop our PPIE community enabling involvement according to individual preferences.
• to support researchers to offer equitable involvement and engagement of patients and the public in research design and delivery.
• to increase NIHR GOSH BRC theme led ownership of PPIE with activities related to theme specific research areas.
• to increase NIHR GOSH CRF leadership PPIE with activities related to CRF specific research areas.

Strand 2: Collaboration and co-production

To increase our PPIE knowledge and capacity to co-develop and co-deliver our PPIE activities by:

• fostering our existing partnerships and relationships
• developing new collaborations with children’s hospitals in Alder Hey, Birmingham and Sheffield (Paediatric Excellence Initiative) and others
• developing closer relationships with the Genomic Medicine Service and other organisations.
• ensuring research activities are considered core business of the hospital with PPIE being at the heart of this and CYP and their families having strategic input into the design and implementation of patient centred research.

Strand 3: Support, learning and training

• to equip research staff at all levels of PPI maturity to deliver best practice in their PPIE by delivering a systematic and accessible learning and development programme.
• to equip all PPIE representatives with the skills to advise and support researchers in their work, build their own skill sets and co-design and co-deliver PPIE.

Strand 4: Communications and dissemination

• to increase the geographical spread of communicating our research by developing a ‘research hospital without walls’ online Patient and Public engagement event package in collaboration with our PEI partners for dissemination to Trusts and organisations beyond GOSH and the PEI.
• to enable a two-way conversation with our PPIE community and engage with new members.
• to increase the geographical spread of communicating our research by shared engagement events with our UCL affiliated CRF’s and PEI CRF partnerships.

Strand 5: Impact

• to equip researchers with accessible evaluation tools to capture, disseminate and promote the impact of PPIE and improve involvement and engagement practice.
• to enable PPIE representatives to report on the impact of their involvement and engagement to drive improvement.
• to measure impact of PPIE within the NIHR GOSH CRF and across the organisation.

Strand 6: Organisational governance

• to embed and increase PPIE influence in governance and broader decision making across the organisation.
• to establish a national PPIE oversight group with representation beyond GOSH and the PEI to ensure input from the wider population

Please see our PPIE Activity Plans for a more detailed overview of our proposed PPIE activities.

Being Seen and Heard – a pledge

Crucially, a ‘being seen and heard’ equity, diversity and inclusion strand will run throughout our strategy and be reflected in our PPIE practices.

What does that mean for our PPIE community?

• use of a hybrid PPIE model for advisory groups to accommodate individual preference for face-to-face vs online involvement and wider geographical spread
• increased flexibility in timing of involvement opportunities to facilitate wider inclusion
• online PPIE meetings to use transcription and captioning to enable involvement of patients with hearing impairments and non-English language speakers.
• awareness of digital access and digital poverty and access to equipment to enable involvement.

How will we support our researchers to develop best EDI practice?

We will train, support and advise researchers on:

• the accessibility of their materials such as Patient Information Sheets
• equity of opportunity in involving PPIE representatives in their research projects
• considering inclusivity in participation in research
• reaching out to community facilitators when involving marginalised or ethnic groups to ensure cultural sensitivity.

Plan, Deliver, Report, Review Cycle

Our programme of PPIE activities will be delivered in stages for each year of the strategy. We will conduct a regular review and report of progress, identifying issues, challenges and new developments. We will revise our strategy as appropriate, and search for new opportunities and knowledge in the field.

Within the NIHR GOSH BRC, PPIE activity is led by NIHR GOSH BRC PPIE Co-Leads Professor Monica Lackhanpaul (Consultant Paediatrician and Professor of Integrated Community Child Health) and Dr Polly Livermore (NIHR Advanced Clinical Academic Fellow – Nurse). They co-chair our newly formed NIHR GOSH BRC PPIE steering committee, which will monitor progress against the PPIE strategy, and is accountable to our monthly NIHR GOSH BRC Science Board, chaired by NIHR GOSH BRC Director Professor Thomas Voit. The steering committee membership includes our PPIE Manager, NIHR GOSH BRC Junior Faculty representatives, and senior researchers, and will seek to include PPIE members in future. The NIHR GOSH BRC will also provide regular reports on PPIE activity to our YPAG and PCAG groups.

Within the NIHR GOSH CRF, PPIE activity is led by the CRF Directors, Lorraine Hodsdon and Professor Stephen Marks. PPIE Managers will provide quarterly updates to the CRF Board and monthly updates at the GOSH Research & Innovation Patient Experience Engagement & Participation Oversight Committee

The NIHR GOSH BRC and CRF will both provide written reports annually to the NIHR.

Towards the end of 2024, we will use the UK Standards as an evaluation tool to identify areas of strength and areas for improvement in our PPIE. This will inform the next three years of the strategy.

We will continue to develop PPIE Impact Case Studies and vignettes and web stories and formal evaluation of impact mechanisms which will be used to continually monitor and report on progress. We will collect impact of involvement narratives and feedback from our PPIE representatives.