Congratulations to all of our funded projects for our recent Beacon Bursaries and Train and Engage rounds. We had some fantastic applications, and both panels were forced to make some tough decisions in deciding where our limited funding could go. We are delighted to be working with colleagues from every school at UCL on these upcoming projects, and can’t wait to see the important, impactful work that is sure to emerge as the projects develop.
Project participants in The Gambia, from Laura Kichskel’s 2017/18 Train and Engage project
We’re delighted to celebrate the success of our current funded projects, which you can read about here:
The funding panels for both schemes were struck by the quality of applications this year, and sensed a notable change in the depth and importance being placed on Public Engagement, and leading on projects that create dialogue with public, patient and community groups.
For more information on our funding schemes, and for case studies on previously funded projects, visit our funding hub.
At the 10th Anniversary Provost’s Awards for Public Engagement, the Provost launched a formal call to the UCL community to join a conversation about where we want to take public engagement at UCL by 2028. He has invited Laura Cream, Head of Public Engagement, to meet him in Spring 2019 to share the Top Ten Targets for Public Engagement at UCL, and the stepping stones for reaching them. So on Wednesday 20 June 2018, our network meeting brought together a variety of UCL staff and students to begin the conversation and open the platform to others at UCL to lead it.
The session was opened by Laura Cream who highlighted that while UCL should be rightly proud of its leading role in the sector, there is still a lot more to do. She underlined that this can only happen with a strong coalition of allies inside and outside the institution. Laura’s challenge to the group, and to her team, is to turn the aspirational rhetoric of institutional strategies and plans into tangible change at UCL and concrete actions which build enduring links to communities in our neighbourhoods. She particularly wanted to encourage us to think about creating clearly signposted ‘doorways into UCL’ for communities outside, cross-institutional platforms which help people shortcut the process of relationship building and delivering on commitments to improving the lives of those who live and work in our neighbourhoods in terms of access to our procurement contracts, employment opportunities and facilities. Finally, she called for a greater focus on public engagement within the curriculum. Laura sets out further her vision for Public Engagement in the next 10 years.
The meeting was then run by leaders in engagement from across the institution.
First up was Professor Sarah Bell, of the Bartlett School of Environment, Energy & Resources, and director of the Engineering Exchange. Sarah pulled no punches and, via an analysis of the relative staffing and governance levels of Public Engagement and Innovation and Enterprise at UCL, argued that universities have become unbalanced in terms of the interests that they serve. Sarah argued that while these two areas have much in common – their focus on the importance of upstream engagement, a special interest in London and the value of co-production and co-design) – what sets them apart is their access to both power and money. Sarah argued that UCL Public Engagement has consistently punched above its weight given its scale and resource-level (citing the inclusion of public engagement in both the draft UCL Research Strategy and UCL Academic Careers Promotion framework as two examples) but asked how much more they could achieve if similarities between these areas could be exploited to further create opportunities to work with public groups in meaningful ways.
Next up, Andi Skilton (Senior Research Associate Lead at NIHR Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology) stimulated discussion around Patient and Public Involvement work at UCL. Andi outlined the PPI agenda as set out by the National Institute for Health Research and INVOLVE, again pointing out that there were many crossovers between this and the broader public engagement agenda which and could be further exploited in the next ten years. The section closed with a discussion between those working in PPI and those working public engagement, creating an opportunity to share expertise and offer solutions to problems that may not occur to you when you’re working within a single, rigid policy area.
Dr Michael Edwards of the Bartlett, and founder member of the International Network for Urban Research and Action (INURA) and of the Planners Network UK (PNUK), gave us insight into his celebrated public engagement achievements. He highlighted his delight to see that public engagement was no longer seen as a barrier to promotion, and in fact can now enhance those prospects. Michael spoke passionately about working with students to engender a sense of engagement as a necessary part of both learning and researching, and that UCL’s work should be guided by the needs of the whole of society, rather than select elements of it. Michael convened a group discussion on how public engagement could work better with the Connected Curriculum, and how we could be more responsive to community need.
Finally, John Braime, Manager of the Volunteering Service, took us through the evolution he had observed over the past 10 years and then focused on many of the barriers left to be navigated to achieve our collective ambition of engaging community and public groups in a meaningful fashion. John gave us summaries of Creating Connections, the Evaluation Exchange and the Science Shop, a few examples of mechanisms that we have used to link groups together and to initiate projects beginning with local, community needs. John challenged the group to think about how we will create more opportunities for external partners to initiate and lead projects, supported by expertise at UCL.
The session ended with Georgia Pitts, Public Engagement Manager for BEAMS, and Lizzy Baddeley, Project Manager for EPSRC Community Engagement, leading a discussion on what our collective destinations for the next ten years might be, and the stepping stones to get there. I bounced around a few tables and eavesdropped on conversations which ranged from sign-posting opportunities for communities, creating Public Engagement champions across UCL departments, establishing more matchmaking mechanisms for projects and a host of other ideas.
Just a snapshot of some of the suggested ‘Destinations’ and ‘Stepping Stones’ for Public Engagement at UCL
The session was lively and has given us much food for thought, but we still want to hear your ideas. We’ll be updating you all soon on our next steps and further chances for discussion in September. In the meantime, share your ideas by emailing the UCL Public Engagement Unit at firstname.lastname@example.org or connect on Twitter by tagging @UCLEngage with the hashtag #PublicEngagementFutures
In the Public Engagement Unit we often come across researchers developing new ways of having conversations with public and patient groups. I had a fantastic meeting with Dr Thomas McDonnell and Dr Chris Wincup in the UCL Department of Rheumatology, about their work using social media to speak with patients. Thomas and Chris talk about their experience here and the insights they’ve gained from using social media to spark conversations about research.
In medical research, it is vital that we frame our studies so that they are relevant and worthwhile to patients. However, in the context of rare diseases it is often difficult to obtain a consensus from large numbers of patients. This is a challenge that frequently faced in the Department of Rheumatology at UCL, where conductions such as systemic lupus erythematosus (SLE) and antiphospholipid syndrome (APS) are rarely seen at a population level. Dr Thomas McDonnell (a post-doctoral research fellow), Dr Chris Wincup (a clinician and MD student at UCL) and their supervisors Prof Anisur Rahman and Dr Ian Giles were keen to find novel ways of surveying the opinion of patients with SLE and APS.
“As a scientist I rarely interact with patients, so it is tough to know if what I find interesting is what patients are interested in. I’d taken an interest in a clotting factor (FXa) and antibodies to it found in both APS and SLE patients. They’re interesting antibodies capable of acting in all sorts of ways, however, I was worried that it may not necessarily interest patients. We thought they’d be more interested in treatments and cures than what is going on behind the scenes as it were.” This confusion on what patients are or are not interested in is based on assumptions prevalent in the scientific community that patients are less focussed on the endpoints of treatment, however as Dr McDonnell explained “lots of our funding is charity based, and charity money is raised by donations, events, things people do to try and help the patients, so, before taking a new route of research, we wanted to make sure it’d be something that gave the charities their money’s worth and ask the people with the diseases what they thought.”
Chris and Thomas’ paper features in the latest edition of Rheumatology: Advances in Practice
Together, the team devised an online questionnaire, hosted on Survey Monkey, which they disseminated online using a variety of social media platforms. They enlisted the help of patient charities including LUPUS UK and APS Support UK and an expert patient to review the proposed questions. Within 4 weeks of the survey being live they had amassed almost 550 responses. Responses were not only from the UK but worldwide including patients from Ireland, Sweden, Holland and the United States. When considering the high number of respondents, Dr Wincup had this to say; “We were amazed to have seen such a positive response in a short period of time! We are very grateful to the assistance that we were offered from both of the charities involved and we saw a high number of responses coinciding with when the charities shared the questionnaire on their social media accounts.”
The results of the widescale patient survey made for interesting reading. Patients were overwhelmingly open to new therapies and were interested in new blood tests to monitor disease activity whilst over 87% of patients felt that the proposed project scored 9 or above when asked to score on how important the research was on a scale of 1-10. “The most interesting data came from a free text box that we left open when asking patients what they were interested in” explains Dr McDonnell, “when analysed, patients mentioned mechanistic research more often than things like flares and pain. In fact it was the 5th most mentioned topic, which was a pleasant surprise”.
The results of this study have now been published in Rheumatology Advances in Practice and have been presented at both national and international conferences. In addition, the group are now looking to repeat this novel patient engagement technique in other projects. They have recently closed a further survey cycle in which they canvased opinion on from patients with SLE regarding diet (in collaboration with Dr Liz Jury and her PhD student George Robinson). They have also launch another survey looking at patient concerns relating to pregnancy in rheumatoid arthritis (with Dr Charles Raine).
Dr Wincup felt that there were a number of exciting outcomes from the project. “The real strengths of this type of engagement are that it is quick to conduct, cost effective and can result in gaining valuable insight from a large number of patients even with relatively rare diseases like SLE and APS. We are very grateful to all those who completed and shared our survey and for the assistance we received from the patient charities. This is really helping us focus our research on things that are genuinely important to patients with the disease.”
Lots to think about here in terms of how patients and researchers can interact through social media and digital techniques. These thoughts have been echoed by several Public Engagement practitioners across the sector recently, highlighting examples of social media being used for two-way engagement. You’ll find much more on this debate at the following links:
On Tuesday 1st May 2018 the UCL SLMS Community of Engagers met to share their different experiences and techniques for facilitating public engagement and public involvement events. UCL SLMS Community of Engagers meetings are designed to share learning and advice, and to link up those within UCL SLMS who are working in Public Engagement and Public Involvement. Each meeting is an opportunity to get advice, share experience, and to get new ideas for working with public and patient groups. Cassie Hugill, Public Engagement Coordinator at the Wellcome Centre for Human Neuroimaging, gives her thoughts on the session.
The session was lead by Andi Skilton and Daniel Taylor, from the Community of Engagers advisory committee with support from other members; Tadhg Caffrey, Niccola Hutchinson-Pascal and myself.
Starting with a discussion on ‘What is Facilitation?’, this lead on to a deeper conversation on aspects of facilitation with each group discussing one of the following topics before feeding back to the wider room;
– The role of a facilitator and qualities that define a good facilitator;
– Good ground rules / behaviours a facilitator should set during the session;
– Managing personalities to ensure everyone’s voice is heard; and
– Strategies for when someone becomes emotional while you are facilitating the session.
These group discussions illustrated just how much experience people already had, and could share, in facilitation through either facilitating their own event, or participating and observing another facilitator.
We then had two speakers present on their experiences and suggestions for facilitating a successful event for particular audiences. Victoria Fleming is a PhD student at the Institute of Cognitive Neuroscience, UCL. She recently ran a PPI event showcasing the results behind the project ListenIn. This project was trialling a new speech and language therapy app with stroke survivors living with the language condition, aphasia. Victoria successfully facilitated the event for 35 participants and discussed the particular needs associated with facilitating an event for stroke survivors.
Victoria Fleming, PhD in Cognitive Neuroscience at UCL
Alison Thompson is a Lecturer in Patient Public Involvement at Queen Mary University of London. Alison regularly facilitates events for people living with Multiple Sclerosis. Her talk discussed the considerations and ways she had to think outside the box to develop successful events for people living with MS including disability access, length of presentations, and how people engaged.
These talks gave an insight into facilitating events for audiences with special needs and illustrated the importance of considering your target audience when designing your event.
Flavia Schechtman Belham is a PhD student in the UCL Institute of Cognitive Neuroscience, and a fantastic project leader from our Train and Engage program. In this blog entry, Flavia discusses her project working with older communities and poetry, to discuss neuroscience.
At the 3rd year (of 4) of my PhD in Cognitive Neuroscience, I had tested dozens of older adults in the lab and asked them to do all sorts of memory tasks while keeping their head still so I could get good brain signal. At the end of the experimental session, most of them would ask me how my research would benefit the older population. My answer was something like “first we need to understand how the brain works so we can come up with practical applications”, or “maybe a psychologist or physician will use my results to create clinical interventions”. Although true, these answers were too abstract to please my participants and, after a while, myself.
That’s when I applied for the Train and Engage grant. My idea was to run workshops and discuss neuroscience with older adults – previous participants or not. I wanted to share my own findings and also the most recent theories and discoveries in the field of cognitive ageing. More than that, I wanted to hear feedback from the older adults and what they thought my next research should focus on. To make the workshops more attractive, I collaborated with a Poetry teacher so that the attendees could express their ideas in a more free and creative way.
I think the workshops were successful and most older adults reported to have enjoyed the sessions and learned from them. However, some surprising things also happened. A couple of attendees bluntly stated that they hated poetry and didn`t want to take part in this part of the workshop. One lady said she wasn`t convinced by anything I said because she didn`t believe in science. On the day I booked a large venue, half of the older adults did not show up. On the day I booked a smaller venue, everybody brought along their partners and siblings without telling me first and we had more people than chairs in the room.
In hindsight, I`m happy these things happened because they made me (and the Poetry teacher) think fast and adapt to an unpredicted situation. They made me realise that no matter how carefully you prepare a workshop, sometimes it will not run smoothly. It was also interesting to see how even fun and interesting activities will never appeal to everybody.
For these reasons, I highly recommend everyone to apply for their own public engagement project with Train and Engage. It develops skills that a regular laboratory-based routine won`t and makes you think about your research from a completely different point of view. And adding “project leader” and “grant awarded” to your CV makes a big difference! But I would also recommend future applicants to keep in mind that this is a long project and your other activities may change after a few months (including thesis writing and job hunting), so plan the project`s timeframe with as many details as possible.
The Train and Engage fund is now open for applications from anyone who has completed our PhD training programmes. The fund gives applicants a chance to try out engagement and put their learning to good use with public, patient and community groups. This week we spoke to Erika Aquino, PhD student at the UCL Institute of Ophthalmology about her project ‘See Science Festival’, connecting the work of the Institute and BRC Moorfields to the local community.
Why did you apply for Train and Engage and how did you find the process of submitting the application?
After attending the Train and Engage workshops, I discovered a true passion for public engagement. The Institute of Ophthalmology felt very detached and unengaged from the local community within which it sits and I proposed to change that! I wanted to involve the local community who may not normally participate in academic activities with the Institute’s world-renowned research and cutting edge science. But in a fun, interactive, exciting way!
The application was straight forward and I was able to ask for help and advice from the Public Engagement team, which was very useful. I also sought help from senior, more experienced colleagues, which improved the application and helped me further establish my ideas.
How was your experience of working with the public and patient groups who attended the event?
It was great fun! The public was a very diverse audience; lots of families with local school children, teenagers of both genders genuinely interested in science, doctors and nurses from Moorfields Eye Hospital wanting to find out more about our research, other staff and students from the Institute wanting to support and interact with their colleagues, retirees wanting to engage with science. It was amazing working with these groups, having to adapt my communication style to suit the audience, actively discussing my research, both explaining and listening to the opinions of the public and thinking about the bigger picture and implications of research. Working with the public was motivating and gave my research value and significance in society.
What was the most surprising thing that happened?
Having research groups from the Institute approach me to ask to be involved in the event after they had heard about it. It was exciting that word was spreading but I had to deal with this unexpectedly as the venue size was the limiting factor on how many groups I could have at the event. I had to reassess logistics but managed to fit in another two stalls which really added to the event’s success. It was surprising how many people at the Institute wanted to participate, when normally there is lack of engagement with “extracurricular activities” from academics, which was great!
What advice would you give for someone starting a project like this?
Be organised! Be prepared to have to multitask and prioritise tasks to in order to get important things done in time.
Give yourself plenty of time! Set yourself deadlines ahead of external deadlines so you’re ready to go.
Keep track of your budget, know how much things costs in advance so you can plan how far your money can go.
Ask for help! There are always people willing to lend a hand and it was vital for the smooth running of the event that I had lots of help. It was great when everyone came together and worked as a team.
What do you think is the most useful thing you learned on the Train and Engage program?
I learnt really valuable leadership and communication skills whilst working with a large group of people. I closely monitored their progress by arranging regular meetings to set expectations and ensure everyone was meeting deadlines. Initially, I had to convince senior colleagues that I was capable of organising the event in a short time-frame by demonstrating that I had considered and managed all needs or concerns. My enthusiasm and resilience proved that I was efficient at achieving goals and delivering success during a fast-moving project.
On Wednesday 21st February the UCL SLMS Community of Engagers met to discuss ways of connecting with diverse public groups. Community of Engagers meetings are designed to share learning and advice, and to link up those within UCL SLMS who are working in Public Engagement and Public Involvement. Each meeting is an opportunity to get advice, share experience, and to get new ideas for working with public and patient groups.
Lorna Benton, Research Associate in the Institute for Global Health spoke about her experience of working with British Bangladeshi community of Tower Hamlets through the NEON (Nurture Early for Optimal Nutrition) project, and the challenges and opportunities presented by working with one of the UK’s most socio-economically disadvantaged ethnic groups. Lorna also spoke about the Health, Education, Engineering and Environment global platform, and emphasised in both cases the importance of establishing early relationships with community groups and being clear with expectations and language in any interaction.
Lorna (centre) with her Bangladesh-based project partners
These thoughts were echoed by Briony Fleming, Public Engagement Coordinator (East) who spoke from her perspective of working within the charity sector in East London. Briony outlined how important it is to understand and respect the differing context of charity and community groups, and that using intermediaries and connection points can help make these conversations easier.
The groups discussed issues that they’ve had with this work in the past, and we agreed that understanding why a community or patient group wants to be involved in a project, and why their involvement is useful for a project, is paramount to establishing a strong working foundation.
Dr Briony Hudson and Dr Caroline Shulman from Pathway and The Marie Curie Palliative Care Research department, University College London, collaborated to create an important Public Engagement opportunity for people who are homeless in London. This project was supported by a Beacon Bursary grant, which are now open for applications.
Briony’s project began with her research on palliative care for people who are homeless in London. The study found that due to a lack of alternatives, many homeless people remained in homeless hostels as their health deteriorated, as they were often unable to access traditional sources of palliative care. The researchers also found that health care professionals were not always aware of the challenges homeless people faced when their health deteriorated, or what hostel staff could and could not offer as support. There is a lack of training and support for hostel staff in these situations, and a clear disconnect between homeless people and those in the medical profession and elsewhere who can help them.
To find a way to bridge this gap, and to increase Briony’s understanding of the challenges and context of this work, she applied for a Beacon Bursary to create a film in collaboration with homeless people and hostel staff. This project had the mutually beneficial aims of creating a useful guide for hostel staff and healthcare professionals, while creating a space for this often hidden group to have a voice in the research around palliative care.
To find out more about how Briony went about creating this project through the Beacon Bursaries, we asked her a few questions.
Why did you apply for the Beacon Bursary and how did you find the process of submitting the application?
While completing the qualitative research that was the backdrop to our beacon bursary application, I was really inspired by the dedication, expertise and attitude of the staff working in hostels and by the amazing things they do, in really difficult circumstances. Furthermore, I was really shocked by the challenges that participants told us about regarding access to high quality care, especially as health deteriorates.
We wanted to highlight some of the issues and challenges that people who are homeless, and the people that support them, experience if they became unwell. We thought that a film would be a great way of doing this, and we hoped that the messages in the film would reach health care professionals who may not have much experience in supporting this group.
How was your experience of working with homeless groups and those supporting the homeless?
I really enjoyed making the film, the staff and service users of the hostel and day center that we filmed in were extremely welcoming and supportive of the project.
What was the most surprising thing that happened?
Having never been involved in the production of a film before, I was impressed with the way that the producer was able to distill hours of filming into an 8 minute film. Although this was quite a lengthy process, I enjoyed being part of it.
What advice would you give for someone starting a project like this?
Things will probably take longer than you planned, be generous in your allocations of time for different aspects of the project.
What’s next for the film and the project?
We are using the film in training for health care professionals and will also make it available on a website we are creating. This website will host more resources and recommendations from the research to make them more accessible for hostel staff. We are also exploring collaborations with the palliative care community to roll out the training we have developed for hostel staff around supporting homeless people with advanced ill health.