https://www.gosh.nhs.uk/our-research/our-research-infrastructure/nihr-great-ormond-street-hospital-brc/nihr-gosh-brc-and-crf-joint-support-research-strategies/our-joint-strategy-for-patient-and-public-involvement-and-engagement/ppie-activity-plans/
PPIE Activity Plans
We acknowledge that some activities will be delivered across both the NIHR GOSH BRC and the NIHR GOSH CRF centres which demonstrates our commitment to collaboration.
Within the BRC, responsibility for the PPIE strategy sits with the PPIE Co-Leads. The PPIE Manager will lead on delivery of the activities shown below, with support from BRC Themes, BRC Operations Team, GOSH R&I Research Communications Team and the EDI Coordinator.
Within the CRF, responsibility for the PPIE strategy sits with the CRF Co-Directors. The CRF PPIE Manager will lead on delivery of the activities shown below, with support from the Head of Clinical Research Operations, and the Head of Nursing and Patient Experience.
The BRC and CRF will work with external organisations for example GenerationR Alliance, Genomic Medicine Service, and other rare disease charities to support delivery of these activities.
Strand 1. Involvement and Engagement
Goals
- To continue building creative and flexible ways to widen access and develop our PPIE community beyond GOSH 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 GOSH BRC theme led ownership of PPIE with activities related to theme specific research areas.
- To increase GOSH CRF leadership PPIE with activities related to CRF specific research areas.
| Activity | Timeframe | Responsible | Measure of success |
|---|---|---|---|
| 1. Review current PPIE membership (core YPAG and PCAG membership). | Long term/Ongoing (4-5 years, by end of 2027) | BRC/CRF | Co-develop a targeted advertising campaign to grow diversity of membership |
| 2. Review PPIE representative membership across the organisation. | Long term/Ongoing (4-5 years, by end of 2027) | BRC/CRF | Scope current PPIE activity across the organisation & conduct a mapping exercise to identify relevant condition-specific charities and patient groups to extend diversity of PPI representatives. |
| 3. Identify skills, develop roles, and ensure there are involvement opportunities at a range of levels. | Short term (1-2 years, by end of 2024) | BRC/CRF | Co-design of role descriptions for PPIE representatives on all GOSH BRC & CRF advisory groups, forums and steering committees and GOSH BRC lay panel member role description. Develop template role descriptions for researchers to utilise. |
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4. Facilitate involvement: PPIE opportunities promoted internally and with external collaborators. |
Short term (1-2 years, by end of 2024) | BRC/CRF | PPIE hub hosted on GOSH website promotes opportunities and roles. |
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5. Researchers supported/guided to embed and deliver their PPIE. |
Short term (1-2 years, by end of 2024) | BRC/CRF | Best practice guidelines, training and guidance developed and provided. |
| 6. Rolling programme of research engagement events held internally | Long term/Ongoing (4-5 years, by end of 2027) | BRC/CRF | Annual Rare Disease Day event (GOSH BRC) and International Clinical Trials Day & Super Saturday event (GOSH CRF) |
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7. Support given to researchers and collaborators to deliver internal/external engagement activities. |
Long term/Ongoing (4-5 years, by end of 2027) | BRC | At least one specific engagement activity per GOSH BRC theme |
| 8. Establish and recruit into a GOSH CRF PPIE Manager role to work collaboratively with the GOSH BRC PPIE Manager to lead and deliver GOSH CRF PPIE activities. | Short term (by end of year 1, September 2023) | CRF | Appoint GOSH CRF PPIE Manager |
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9. Establish a GOSH CRF Young People’s Forum (YPF) and Parent and Carers Forum (PCF) by adopting the existing good practice model of the GOSH YPAG and PCAG to ensure that the research undertaken in GOSH CRF is reflective of the diverse and geographically spread population it serves. |
Short term (1-2 years, by September 2024) | CRF | Establish GOSH CRF Young People’s Forum (YPF) and Parent and Carers Forum (PCF): Terms of Reference approved, and initial quarterly meetings established. |
| 10. Facilitate feedback and involvement opportunities for patients and families, ensuring the views of our patient population are comprehensive and representative. The GOSH CRF play specialist and GOSH CRF PPIE manager will work with our patients and families to facilitate feedback and offer involvement opportunities through a variety of creative mediums. | Short term (1-2 years, by September 2024) | CRF | Regular updates provided at GOSH R&I Patient Experience Engagement & Participation Oversight Committee. Updated feedback displayed on ‘you said we did noticeboards’ in GOSH CRF. |
| 11. Establish new engagement events focussed on not just our GOSH CRF patients but their families too, as well as those groups who are underrepresented in our activities. The format of these events will be guided by feedback from future stakeholder events |
Medium term (2-3 years, by September 2025) |
CRF | Establish stakeholder engagement events to determine GOSH CRF specific engagement activities e.g. patient sibling event / GOSH CRF stakeholders annual research involvement and engagement event. Document engagement activities completed as a baseline and build upon this to increase event attendance and diversity – baseline data collected by end 2024 and future targets set from this. |
Strand 2. Collaboration and Co-Production
Goals
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.
- securing increased financial support for PPIE activity from external partners.
| Activity | Timeframe | Responsible | Measure of Success |
|---|---|---|---|
| 12. Accessible training package for researchers (please see strand 3.) & patient and public facing ‘Research & Science’ engagement webinar series co-developed. | Long term/Ongoing (4-5 years, by end of 2027) | BRC/CRF | Number of researchers, investigators and collaborators signposted to/accessing training. PPI work experience sessions & ‘UCL GOSH ICH Christmas Lectures’ attended by schools recorded. |
| 13. Promoted training and engagement programme with UCLH, UCL GOS ICH, London RDS & NIHR. | Long term/Ongoing (4-5 years, by end of 2027) | BRC/CRF | Number of researchers, investigators and collaborators signposted to /accessing training. PPI work experience sessions & ‘UCL GOSH ICH Christmas Lectures’ attended by schools recorded. |
| 14. Increase co-production and collaboration opportunities for GOSH YPAG (including GenR), GOSH CRF YPF and PCF. | Long term/Ongoing (4-5 years, by end of 2027) | BRC/CRF |
Short term - Survey of PEI and CYP to identify interest in co-development and co-delivery of PPIE training modules and webinars series. PPI group established to undertake this activity. Medium term - Co-development of GOSH YPAG Induction Handbook to increase membership and accessibility (with ToR,Jargon buster etc), updated GenR toolkit materials (training researchers in how to involve CYP in their research- this toolkit is hosted on eYPAGnet website). Long-term - At least three co-production and collaboration activities delivered annually (GOSH BRC) and one (GOSH CRF). Co-produced and collaborative activities logged and reported quarterly/annually with impact of involvement of CYP measured also. - Increase co-production and collaboration opportunities for GOSH CRF patient and carers user forum. |
| 15. Secure additional external funding to support PPIE activity | Medium term (2-3 years, by September 2025) | BRC | Minimum one application/bid submitted per year to external partners seeking additional financial support for core PPIE activities across GOSH and UCL GOS ICH. |
| 16. Codesign and develop a series of engagement events and interactive activities with GOSH CRF patients and families for the design and use of the new purpose-built GOSH CRF unit (Autumn 2023) to ensure it is fitting for the needs of our research participants. | Short term (1-2 years, by end of 2024) | CRF | Feedback collected from GOSH CRF patients and their families on the new GOSH CRF build is fed back though the operational leadership meetings with the built environment team. Share this through a series of interactive feedback events alongside displaying ‘we said you did information boards’. |
| 17. Codevelop our age-appropriate digital communications in partnership with GOSH DRIVE / IT and our GOSH CRF YPF and PCF through establishing a digital bedroom in GOSH CRF whereby patients/ carers and staff will be able to explore new technologies and equipment to increase our inclusivity and enhance our GOSH CRF participant experience. The outcomes of which will be shared widely through local and national forums | Medium term (2-3 years, by September 2025) | CRF |
Quarterly updates on activities shared at GOSH CRF Senior Management Team meetings. Feedback from patients using the digital bedroom used to refine and update the technologies used, display this through ‘you said we did’ boards as well as publication and quarterly CRF SMT reports. |
| 18. Codevelop our age-appropriate digital communications in partnership with GOSH DRIVE / IT and our GOSH CRF YPF and PCF through developing age-appropriate digital communications to capture the wider voice of patients and the public and facilitate a two conversation between research patients and the public. We will use digital innovations to increase the diversity and membership through creating virtual spaces to meet and work with local communities to ensure our population is fully represented. | Long term/Ongoing (4-5 years, by September 2027) | CRF | Baseline data collected to understand our digital maturity with the GOSH CRF PPIE function and a co-developed action plan for using digital innovations to increase our diversity of membership though digital functions (in collaboration with our stakeholders and GOSH CRF YPF and PCF) |
Strand 3. Support, learning and training
Goal
- To equip research staff at all levels of PPIE 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
| Activity | Timeframe | Responsible | Measure of Success |
|---|---|---|---|
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19. Co-develop and co-deliver tailored online PPIE training packages and toolkits of materials for (a) investigators and collaborators, researchers and staff undertaking research and (b) PPIE representatives on advisory groups, committees and funding call panels. |
Long term/Ongoing (4-5 years, by end of 2027) | BRC/CRF |
Short term - Training needs analysis of investigators and collaborators, researchers, staff and PPI representatives conducted. - ‘Introduction to PPIE’ handbook for staff and PPIE representatives co-developed. - Timetable of ‘PPIE in research’ introduction sessions delivered to GOSH R&I/ORCHID & GOSH CRF new starters and PPIE representatives. - Co-designed short bite sized, ‘Introduction to PPIE’ published to GOSH BRC website. Medium term - Finalise co-development of PPIE training modules for researchers and PPIE representatives. - - Collaborate with GLA team to develop PPIE training modules for the GOSH DEN online learning portal and PPIE representatives’ modules hosted on GOSH BRC website and tailored training delivered. - Seek advice on opportunity to develop the PPIE training modules into a webinar series (to publish to GOSH BRC website, GOSH DEN and GOSH YouTube channel) Long term - ‘Introduction to PPIE’ as part of GOSH GOLD mandatory staff induction training. - Report on numbers of research staff redirected to online training or guidance documents to enable them to carry out their PPIE - Review and report annually on standard of PPIE content in BRC funding calls. |
| 20. Provide mentorship and tailored advice for (a) researchers and (b) PPIE representatives (including signposting to training already available). | Long term/Ongoing (4-5 years, by end of 2027) | BRC/CRF | |
| 21. Develop a PPIE training hub hosted on GOSH website (including signposting to existing learning and development opportunities). | Long term/Ongoing (4-5 years, by end of 2027) | BRC/CRF | Work with R&I Communications team to develop the hub. |
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22. Include PPIE content in ‘Introduction to research sessions’ facilitated within GOSH Learning Academy leadership programmes (bands 5-8). |
Short term (1-2 years, by end of 2024) | BRC/CRF | Collect baseline data on number of GLA sessions that incorporate introduction to research sessions within their programmes. Increase this by 25%. |
| 23. Provide GOSH CRF clinical placement opportunities for students, research delivery staff and early career researchers. | Long term/Ongoing term (2-3 years, by September 2025) | CRF | Record statistics of researchers and staff receiving attending GOSH CRF placements and their feedback on the benefits of their introduction to PPIE activity. |
| 24. Provide mentorship and tailored advice for (a) researchers and (b) PPI representatives (including signposting to training already available). | Medium term (2-3 years, by September 2025) | CRF | Report on numbers of research staff redirected to online training or guidance documents to enable them to carry out their PPIE. Record numbers of staff that mentorship is provided to. |
| 25. (a) Work with GOSH CRF YPF and PCF to co create content for inclusion as part of the GOSH CRF staff induction framework (b) Work with GOSH CRF YPF and PCF to co-create content for a video for patients and families to explain the research journey within GOSH CRF when participating on a clinical trial | Medium term (2-3 years, by September 2025) | CRF | Co-produce short animation detailing a ‘what to expect ‘information video for patients and families when they embark on a clinical trial in the CRF. Monitor number of families accessing this resource and collect feedback. |
Strand 4. Communication and Dissemination
Goal
- 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 across and beyond the PEI.
- to enable a two-way conversation with our PPI 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.
| Activity | Timeframe | Responsible | Measure of Success |
|---|---|---|---|
| 26. Co-designed and co-delivered Patient and Public Engagement “Research and Science” quarterly webinar series. | Long term/Ongoing (4-5 years, by end of 2027) | BRC/CRF |
Short term - Consultation exercise undertaken with partnership organisations, PEI and internal/external stakeholders. - GOSH R&I Communications team provide expert advice/direction on hosting webinars, social media platforms and advertising. - Mapping exercise of GOSH school and other schools, colleges, places of learning, faith organisations and charities undertaken. - Co-design the webinar series format with young people and plan the timetable. - Consult with researchers and PPI representatives on ‘speaking to a lay audience’ and identify research and science communicator training lead. Medium/Long term - Finalise‘ Research and Science’ webinar series timetable/content. - Develop training package for researchers and (and co-presenters: PPI representatives) ‘speaking to a lay audience’. - Advertising campaign & delivery of quarterly ‘Research and Science’ webinars (to be hosted on PPI Hub as a library of learning) - Host ‘Research & Science Webinars with sessions led across the five years by: - GOSH BRC themes (2-3 webinars) - Early career researchers’ (1 webinar) - PEI partners (1 webinar) - Report on attendance figures/demographics etc. |
| 27. Patient and Public Engagement (PPE) library: web-based resources to disseminate research engagement and evidence to patients and the public in accessible formats. | Long term/Ongoing (4-5 years, by end of 2027) | BRC/CRF | |
| 28. GOSH CRF Senior leadership team to work with R&I Communications team to develop GOSH CRF communication plan to underpin GOSH CRF objectives and PPIE strategy | Short term (1-2 years, by end of 2023) | CRF | To have a finalised communications plan. |
| 29. Provide monthly updates on CRF PPIE activity to GOSH R&I Patient Experience Engagement & Participation Oversight Committee. Provide quarterly reports on GOSH CRF PPIE Activity to GOSH FT Patient & Family Experience Engagement committee | Short term (1-2 years, by end of 2024) | CRF | To establish reporting process to feed into R&I Patient Experience Engagement & Participation Oversight Committee. Provide quarterly reports on GOSH CRF PPIE Activity to GOSH FT Patient & Family Experience Engagement committee. |
| 30. Expand the GOSH CRF Research Champion initiative and increase inclusion of research champions trust wide. | Long term/Ongoing (4-5 years, by end of 2027) | CRF | To establish 1 research champion per directorate by the end of the 5 year period. |
| 31. Work with R&I Communication Team and GOSH CRF YPF and PCF to disseminate the research undertaken in GOSH CRF both internally and national across a variety of media channels. | Long term/Ongoing (4-5 years, by end of 2027) | CRF |
We will provide regular reports to CRF board on our internal and national communication outputs. |
Strand 5. Impact - ‘Making a difference’
Goal
- to equip researchers with accessible evaluation tools to capture, disseminate and promote the impact of PPIE and improve involvement and engagement practice.
- to enable PPI representatives to report on the impact of their involvement and engagement to drive improvement.
- to measure impact of PPIE within GOSH CRF and across the organisation.
| Activity | Timeframe | Responsible | Measure of Success |
|---|---|---|---|
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32. Collaborate with our PEI and GOSH BRC PPIE Steering Committee and National PPIE Oversight Committee to co-develop new and updated processes and resources to support researchers to evaluate their PPIE and for PPI representatives to feedback on the impact of their involvement. |
Short term (1-2 years, by end of 2023) | BRC/CRF |
- Co-develop a repository of PPIE impact assessments and tools for researchers to access. - Co-develop an accessible format for impact reporting for PPIE representatives. |
| 33. Online PPI Training hub updated with resources. | Medium term (2-3 years, by end of 2025 | BRC/CRF |
Short term - Signpost researchers to PPIE Training hub and report on numbers accessing resources. |
| 34. Develop a central Impact reporting system. |
Long term/Ongoing (4-5 years, by end of 2027) |
BRC/CRF |
Medium term - Meet with GOSH GLA team to plan the rollout of an Impact hub on GOSH DEN. Co-develop and co-design the infrastructure. |
| 35. Review impact of activity against our overarching PPIE strategy through a formal reporting procedure | Short term (1-2 years, by end of 2024) | BRC/CRF |
Long term - Ongoing monitoring of PPI shows a maintenance or increase in reported changes actioned as a result of patient/public input, which the contributors ratify as meaningful impact. |
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36. Publicly share examples the impact of our work via GOSH PPIE Impact Case studies |
Long term/Ongoing (4-5 years, by end of 2027) | BRC/CRF |
Updated - PPIE section of GOSH website with annual PPIE Highlights Report, PPIE Impact Case Studies Report and PPI representatives’ testimonials and Blogs |
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37. Publicly share examples the impact of our work via BRC Theme/CRF specific PPIE Impact Case studies |
Long term/Ongoing (4-5 years, by end of 2027) | BRC/CRF | 2 annual GOSH BRC Theme specific PPIE Case Study reports produced, 1 annual GOSH CRF specific PPIE Impact Case study produced. |
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38. Review impact of activity against our overarching PPIE strategy through a formal reporting procedure. |
Long term/Ongoing (4-5 years, by end of 2027) | BRC/CRF | Update on PPIE Strategy and impact of PPIE please see Plan, Deliver, Report, Review Cycle section. |
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39. Embed NIHR participant in Research Experience Survey (PRES) into GOSH CRF workflows. |
Medium term (2-3 years, by September 2025 | CRF | Baseline data for PRES completion & increase this by 25%. |
Strand 6. Organisational Governance
Goal
- to embed and increase Patient and Public Involvement (PPI) 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
| Activity | Timeframe | Responsible | Measure of Success |
|---|---|---|---|
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40. Form an operational NIHR GOSH BRC PPIE Steering Committee which will include PPI representatives to support PPIE decision making e.g. prioritisation of resources, approve programme of events planned etc. |
Short term (1-2 years, by end of 2024) | BRC/CRF |
Short term - Terms of Reference (ToR) ratified. - PPI role descriptions and process for involvement agreed, action plan for involvement developed. - Selection process for PPI representatives completed. - Reporting on number of meetings held and actions and work programme outcomes. Long term - Numbers of PPI representatives trained/taking up positions, report on involvement and training. - Regular patient/public participation in GOSH CRF boards/ groups & contribution to CRF strategies assessed. |
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41. Form an operational GOSH National PPIE Oversight Committee with representation beyond GOSH and the PEI. |
Long term/Ongoing (4-5 years, by end of 2027) | BRC/CRF | As above with involvement of PEI. |
| 42. Form an operational GOSH CRF YPF and PCF. | Long term/Ongoing (4-5 years, by end of 2027) | BRC/CRF |
Short term - Terms of Reference (ToR) ratified. - PPI role descriptions and process for involvement agreed, action plan for involvement developed. - Selection process for PPI representatives completed. - Reporting on number of meetings held and actions and work programme outcomes. Long term - Numbers of PPI representatives trained/taking up positions, report on involvement and training. - Regular patient / public participation in GOSH CRF boards/ groups & contribution to CRF strategies assessed. |
| 43. Include PPI representation across the organisation including GOSH CRAC and RDAG, NIHR GOSH BRC funding call panels, and BRC governance meetings where relevant e.g. Strategy Board. | Short term (1-2 years, by end of 2024) | BRC/CRF |
Short term - Updated ToR for GOSH CRAC and GOSH RDAG - Evaluate Strategy Board and BRC Theme management meetings - Evaluate BRC theme specific funding calls panel opportunities and impact Long term - Numbers of PPI representatives trained/taking up positions, report on involvement and training. - Regular patient/public participation in GOSH CRF boards/groups & contribution to CRF strategies assessed. |
| 44. Produce a GOSH PPIE Expenses Policy and Procedure for researchers and PPI representatives informed by NIHR and GOSH finance guidelines. | Short term (1-2 years, by end of 2024) | BRC/CRF | Produce an overarching GOSH PPIE Expenses Policy and Procedure for researchers and PPI representatives informed by NIHR and GOSH finance guidelines. |
Glossary of terms
Our strategies should be understandable for a variety of audiences but we may sometimes use acronyms or technical terms that you may not be familiar with