By Professor Helen Ward
Director, Imperial Patient Experience Research Centre
Imperial Patient Experience Research Centre, aka PERC, started blogging about 18 months ago with this Welcome to our Blog post. The blog was set up to “share the latest learnings and news from the PPI community, points of views from the team on the advances and issues of public involvement, case studies of good involvement practice to inspire new ideas, and a whole host of other top tips and personal pointers”.
Since then we’ve published 25 blogs, ranging from case studies of good practice and opinion pieces, through to notices about events, training, and top tips for applicants for our grants scheme.
This entry is part 10 of 14 in the series Case studies
We are delighted to announce the NIHR Imperial BRC PPI Grant Scheme is now open until Friday 19 October 2018, 5pm. The purpose of this grant scheme is to support motivated researchers and their teams to undertake meaningful and impactful public and patient involvement that will shape their research and enhance the translation of biomedical research from bench to bedside. As this is our fourth round of funding, we spoke with Dr Candice Roufosse, Senior Clinical Lecturer at the Centre for Inflammatory Diseases about how winning a PPI Grant helped improve their research.
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.
Elspeth Mathie discusses her recent study on the importance of giving feedback to the public in PPI.
Are members of the public wasting their time?
It is widely accepted that Patient and Public Involvement is beneficial for health research. However, imagine spending time giving your opinion and never getting any feedback. Some members of the public ask “am I wasting my time”? Many PPI contributors (lay members, service users, patients, members of the public) say that they contribute to the design of research studies but do not hear if their comments get to the researcher, are useful or make any difference to the research.
Biomedical Engineer Shruti Turner reflects on the recent CRISH (Co-creating Innovative Solutions in Health) course and explains that engineers could learn a lot from PPI.
This entry is part 8 of 14 in the series Case studies
In conversation with: Thibaut Jombart, Lecturer in Genetic Analysis
Working within: HPRU (Modelling Methodology)
What did you do?
I organised a hackathon (i.e. a coding workshop) called ‘Hackout 3’, which was funded by the Medical Research Council (MRC) and Health Protection Research Unit (HPRU). The event brought together epidemiologists, stakeholders from public health institutions, and members of the public (professional computer programmers) to develop new statistical tools for disease outbreak analysis and response.
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.
Readers of this blog will be familiar with Patient and Public Involvement in a research setting. But what does PPI look like within health care services? Here Imperial NHS Trust Lay Partners Mariam Mohammed and John Norton share their perspectives.
This entry is part 5 of 14 in the series Case studies
In conversation with: Aime Boakye, Junior Study Coordinator and PPI/E Lead
Working within: HPRU in Respiratory Infections
What did you do?
It was a primary aim of our NIHR Health Protection Research Unit (HPRU) in Respiratory Infections to seek meaningful patient and public input in our three research areas: Influenza, Tuberculosis and Other Acute Respiratory Infections. Therefore, we appointed two patient representatives (for Flu and Tuberculosis) who were invited to our key strategic and public meetings.
Additional to that, in January 2017, we set up a panel of patients and members of the public who either had experience of respiratory conditions or were interested in our three research areas.