John Norton, Public Contributor and Halle Johnson, Public Involvement Officer at Imperial Patient Experience Research Centre reflect on their recent experience of participating in a tweet chat aiming to raise awareness and increase public understanding of the benefits of responsible health data sharing to improve health outcomes.
On the 27th of April 2021, Data Saves Lives (a multi-stakeholder initiative led by the European Patients’ Forum and the European Institute for Innovation through Health Data) held a live tweet chat which posed the question: “How can we manage the tension between individual privacy rights and the wider societal good of health data use?”
Dr Ali Abbara and Dr Chioma Izzi-Engbeaya from Department of Metabolism, Digestion and Reproduction, Section of Investigative Medicine discuss their public engagement work with the Society for Endocrinology.
The Society for Endocrinology has a long-standing mission to inform the public about hormones and hormone-related conditions. In order to meet this aim, it has formed a ‘Public Engagement Committee’, of which, we are both members. The committee regularly organises outreach activities, including at schools and science communication events, to engage with the public and amplify knowledge about hormones.
In this age of ‘post-truth’ news, the Society for Endocrinology has made a significant investment to provide a reliable and accessible source of information for the public about hormones and the conditions that can transpire when they are not functioning normally.
Lillie Pakzad-Shahabi, Clinical Trial Coordinator, Neuro-oncology, Department of Medicine, Imperial College London
Why did you decide to do Patient and Public Involvement (PPI) in your clinical trial?
After receiving a NIHR Imperial BRC PPI award (Round 3) to run a project with a secondary school, I stumbled across the PERC-ICTU PPI training series at Imperial. These workshops helped me to understand the importance of PPI early in clinical trial design. I decided it would be useful to involve patients from our clinic and their family members to review upcoming clinical trial protocols.
We hoped to gather the perspectives of patients and their family members on our plans for the design of two clinical trials.
At the 2018 Imperial Festival we opened the Patient and Public Involvement (PPI) Café for the first time. A new PPI methodology – a hybrid between a science café and a more typical PPI workshop – it was designed by five Imperial research centres in partnership with Patient and Public members.
Our aim was simple: to give the public a flavour of PPI by contributing to real-life research projects. As well as getting fresh public input into some projects, we wanted to try something novel in PPI and to have some fun.
Why a café?
Despite their modern association with tax-dodging and precarious labour, coffee houses have for centuries been associated with free discussion and the exchange of ideas.
Calls are now open for contributions to the 2018 Engage Conference. We hear from Nathan Green and Denise Sime who presented at last year’s conference. They discuss their experience of sharing their learnings on LoL-Lab, a co-created comedy event between Imperial researchers and the public. If you would like to apply to be part of this year’s conference, get in touch with us at email@example.com for support with an application.
What is the Engage conference?
Nathan: The National Coordinating Centre for Public Engagement (NCCPE) annual conference, Engage 2017, was held over two days in December in Bristol. We saw presenting at this workshop as a fantastic opportunity to share lessons from our own public engagement experience.
In this guest blog, Imperial‘s Cathy Thomas offers advice on how to use social media to engage (and involve!) the public in your research. What have your experiences with using social media for engagement been? Share your experiences in the comments.
Why bother with social media?
There are over one billion active users on Facebook and over 100 million monthly Instagram users – which means that if you’re looking to connect with members of the public, it’s worth considering how social media and other digital tools could support or enhance your engagement activity.
The useful thing about social media is that it’s a discursive medium that encourages sharing and participation, so rather than simply using it as a tool to promote what you’re doing, there will be ways in which it can support two-way engagement.
Find out how Imperial researchers can engage the public in their work at QPR’s annual Community Day.
This entry is part 1 of 1 in the series Case studies
In conversation with: Alice Halliday, Research Associate
Working within: HPRU in Respiratory Infections
What did you do?
We secured a £1,000 grant from the British Society for Immunology to develop an animated film about latent tuberculosis (TB) infection, which was matched by funding from the NIHR Health Protection Research Unit (HPRU) in Respiratory Infections. So together with my colleagues, Mica Tolosa-Wright and Ishita Marwah, we developed the script and initial version of the film over a period of about 3 months (Feb–April 2017).
In conversation with: Emma White, Research Technician
Working with: Professor Takats
What did you do?
One of the main pieces of research activity in the group revolves around using Rapid Evaporative Ionisation Mass Spectrometry (REIMS) in the form of the iKnife. This is a surgical diagnostic tool that uses the ‘smoke’ bi-product of surgical diathermy (a widely used alternative to traditional scalpels, where electrically induced heat makes precise cuts to remove unwanted tissue whilst minimising blood loss) for real-time tissue identification.