Funding for 0.4FTE during the lifetime of the programme that was combined with funding for 0.6FTE available through AmgenFoundation to provide a full-time, temporary role in the public engagement and patient involvement space. We have had various people in this role over the course of the funding.
Impact
The budget for a core university funded role in the public engagement space within the UCD Conway Instutute was removed in the wake of the conomic crisis of 2008. This resource deficit meant that the Institute engagement programme ended. This ISSF funding for a dedicated Public Engagement in Research Officer enabled UCD Conway Instutute and Systems Biology Ireland to deliver public engagement activities for a range of stakeholders as well as training and engagement opportunities for researchers in this area.
Sustainability
Over the course of the iSSF funding cycles, the PER Officer led the developmnent of PE/PPI funding proposals to Science Foundation Ireland (SFI) Discovery programme for engagement activities and secured 2 awards worth €100k in total. These 1-year awards were for ensuring equity of access to a STEM placement programme in 2021 for transition year pupils (15-16 years) and an art exhibition STEP Through the Looking Glass; Stories Told of Experimental Processes in 2022. To date, the PER Officer has enabled th esuccessful delivery of goals and objectives in 3 projects: Irish Cancer Society support for The Patient Voice in Cancer Research (2019, €30k); Amgen Foundation support for the Amgen Biotech Experience (2017-2020, €245k; 2020-2023, €300k). It is hoped to use programme evaluation to build future proposals and leverage further funding.
PPI TRAINING
Public and patient involvement (PPI) in research was in its infancy in Ireland when this ISSF funding was secured. In conjunction with UCD Human Resources People Organisation & Development, we worked to develop a 'train the trainer' programme with external expertise from the United Kingdon (patient advocate, Derek Steward OBE and Bec Hanley, former Director, INVOLVE).
Impact
In 2018, nine staff were trained over 2 days with an additional 12 individuals (patient advocates, researchers, charity representatives) involved in day 1 that emphasised PPI concepts while day 2 focused on delivering PPI training. Trainers hvae since delivered training workshopos internally for PhD students, UCD TopMed 10 postdoctoral trainees, other UCD postdoctoral trainees as part of HR training catalogue and externally for Irish Cancer Society funded researchers and irish Association for Cancer Researchers.
Sustainability
A shared research and learning network was set up with participants who completed PPI training and they continue to meet every 2 months for peer support/learning. This was initiated and led by Dr. Éidín Ni Shé,Shé, PPI Ignite Coordinator and is now being led by Dr Emma Dorris, Public and Patient Involvement Project Officer and Programme Manager PPI Ignite@UCD. This shared learning network nurtures the emergence of PE/PPI champions, raises awareness of PE/PPI and supports the wider UCD research community with resources, toolkits and access to community networks for PE/ PPI activities. This is happening in tandem with the development and implementation of an institutional framework for PPI being developed under the Health Research Board Ignite programme.
PE/PPI ACTIVITIES & EVENTS
Supporting Patient Initiatives
Patient Voice in Cancer
- Delivery of 2 workshops per year, some co-hosted with National Cancer Registry Ireland; National Biobanking Working Group, National Cancer Research Institutes UK
- Secured 1-year pilot funding from ICS to expand initiative nationwide
- Developed PVCR brand with capacity to be individualised to other PV initiatives
- Publication: Shé, É.N., Gordan, A., Hughes, B. et al. “Could you give us an idea on what we are all doing here?” the Patient Voice in Cancer Research (PVCR) starting the journey of involvement in Ireland. Res Involv Engagem 7, 63 (2021) – (opens in a new window)www.doi.org/10.1186/s40900-021-00301-1
- Developing and sustaining patient partnership communities established through PVCR particularly during COVID-19 pandemic with a series of 8 monthly fireside chats with topic experts hosted by patient advocate. 400 registrations
- Associated PVCR Fireside Chat podcast series launched on streaming platforms – (opens in a new window)www.soundcloud.com/ucd-conway/sets/ patient-voice-in-cancer-research-fireside-chat (Soundcloud, iTunes and Spotify)
Patient Voice in Diabetes
- Participation in 'Train the Trainer' workshop
- Held 2 workshops: 13 June 2018 (UCD) in conjunction with Diabetes Ireland; 14 November 2018 (St. Vincent's University Hospital)
Patient Voice in Arthritis Reserach
- Embedded PPI strategy within research group
- Quarterly newsletter (patient & researcher editorial board)
- 1st national arthritis research conference open to patients, clinicians & academic researchers (Nov 2018)
- Publication: PLOS One: Facilitating public and patient involvement in basic and preclinical health research –
(opens in a new window)https://journals.plos.org/plosone/article?id=10.1371/ journal.pone.0216600 - Patient workshop: Facilitated by Quest, NUIG (June 2019)
- Participation in World Cancer Day (February – Choirs for Cancer), St Patrick’s Festival (March), UCD Festival (June)
'Debating Aging; a transdisciplinary engagement forum' (2018/2019)
Public engagement series to examine ageing as a complex phenomenon that requires a transdisciplinary frame of analysis. The series of lectures and events analysed the biological, medical, psychological, social and cultural factors that can facilitate positive experiences of old age. Lectures and workshops involved academics from health sciences, social sciences, the humanities, medical humanities, psychology, and education. Non-academic participants included nurses and carers, NGOs, adult community groups and people from various ethnic and cultural backgrounds.
UCD Artist in Residence 2020 /2021
In partnership with UCD Parity Studios, the principal aims of this residency were to support mutual exchange between the artist and Institute researchers, to explore current and prospective research through the lens of artistic practice. Artist undertook an initial research and development phase, working closely with researchers followed by a production phase during which time she was involved in developing an application for further funding. Lorna Donlon is a tapestry weaver, textile and installation artist with a BSc Cell and Molecular Biology.
Impact: Lorna Donlon initiated conversations with 27 research groups leading to them finding new ways to communicate and present their research. The display of new creative works within the public spaces in Institute provides a new narrative for scientific research and prompt discussion. During her residency, Lorna applied for and won a Golden Fleece Award 2021 – (opens in a new window)www.goldenfleeceaward.com/artists/lorna-donlon. Sustainability: Awarded SFI Discover 2021 programme funding 2021 (€49,999) for nationwide exhibition (physical and digital) to engage the public in research through the creation of new work entitled STEP Through the Looking Glass; Stories Told of Experimental Processes.
Amgen Biotech Experience
PER Officer is also project coordinator for this programme in Ireland. The global science education initiative (www. amgenbiotechexperience.com) provides continuing professional development training in molecular biology for teachers in secondary schools and allows them to borrow equipment and consumables to carry out experiments in the classroom. Aspects of this programme have supported learning and delivery of other PE activities within the Institute such as the SFI Discover funded transition year work placement programme.
Impact: Supporting education and awareness of STEM careers and molecular biology while enabling secondary teacher CPD particularly during the COVID-19 pandemic. This programme has trained 195 teachers from 115 schools from across Leinster and reached 12,468 pupils. In addition to UCD, there are distribution centres in Laois, Monaghan and Dublin City north.
The programme builds community across the education and biopharmaceutical sectors as well as wider community. In 2021, we celebrated 30th anniversary of global ABE programme; provided an ABE activity with Muslim community during National Science Week; participated in an Amgen Dun Laoghaire staff webinar with teacher, Hilary Rimbi, St Andrew’s and her past pupil, Diya Mecheri who is now a STEM undergraduate; Declan Cathcart, Temple Carrig was the first Ireland representative on the ABE Master Teacher Fellowship and Allen Harmon, Amgen Ireland Vice President presented six teachers with recognition awards for their contribution to the programme (online event with 40 teachers).
We working collaboratively with networks in the Government Department of Education & Skills. In 2021, ABE provided an online workshop in March on Using Big Data to Solve Big Problems for 25 teachers. We worked with the Business in the Community team in August to deliver an information session for 20 teachers from Monaghan, Cavan, Laois and Offaly. ABE strives to build equity in the programme through targeted recruitment of teachers from DEIS designated schools. In 2021, DEIS teacher involvement rose from 18% to 42%. We leveraged these networks and learning from ABE programme to develop the transition year placement programme.
STEM placement programme
Equity of access to a structured STEM placement programme for transition year pupils through securing SFI Discover funding, developing and delivering pilot and initial TY week.
Impact: 72 pupils attended in total over 3 weeks in Sept, Nov 2021 and Jan 2022. PhD and postdoctoral researchers received PE training and helped to design and deliver hands-on activities. There were research and career talks from staff working in academia and industry.
National ISSF PE Network
- Two meetings to share PE learnings between QUB and UCD
- Attended QUB hosted NCCPE PEP network meeting