- Why did nobody ask us?! Reflections and findings from co-produced research into children’s vaccine uptake.
- Three key takeaways from our participation in the Research Engagement Network (REN) community roadshows
- You and Your Health Data: Results of our Great Exhibition Road Festival activity
- “I sound like Darth Vader and I cough up fur balls” How people living with Airway Stenosis have informed my research career so far.
- How public involvement changed our research question exploring experiences of people with Long Covid
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. You can find them all here, listed by category and by date. You can now subscribe to the blog to be notified as pieces are published – on the right hand-side of the home page.
So, what have you liked? Here are our top 5 blog posts from 2018, ranked by average number of views per month. After all, with some having only been posted last month, it doesn’t seem fair just comparing totals (as some other bloggers have done). Sorry, I can’t shake off that scientific rigour, even at Christmas. Let the countdown commence…
1. The winner, by some margin, is The PPI Café – open for ideas. This was published in May 2018 and has had an average of 125 hits every month since, reaching over 300 in July. The PPI Café seemed to strike a chord as a new way of involving people in research. Described as “a hybrid between a science café and a more typical PPI workshop”, it was designed by five Imperial research centres in partnership with members of the public. It had its first outing at the Imperial Festival in May, and has since been presented, discussed and used widely. We even took it to Singapore where it proved popular with visitors to a local market, and we are planning a series of cafés in the new year to open up conversations with people living and working near Imperial’s new White City Campus.
2. In second place is a more recent post, “Seldom Heard Voices”: should we do patient and public involvement (PPI) differently?, which hit 139 reads in just three weeks after it was first published in October. Dr Mel Hughes from Bournemouth University described the work of their new Centre for Seldom Heard Voices, which aims to engage with marginalised and often silenced voices through user-led or co-created approaches.
The next three were all case studies which shared stories about different ways researchers can work with patients and the public to share ideas, identify research priorities and discuss opportunities.
3. Dr Candice Roufosse, Senior Clinical Lecturer at the Centre for Inflammatory Diseases, explains how winning one of our PPI Grants helped improve her research. In An interactive PPIE workshop on kidney transplant rejection, she describes the half day event which attracted 40 patients and others affected by transplant. The workshop has helped in the development and launch of a UK multicentre clinical trial for the treatment of antibody-mediated rejection in kidney transplantation, and has had average of nearly 100 reads a month so far.
4. Involving patients and the public in a group to inform the whole research process is an excellent way of building strong relationships and can lead to meaningful public involvement. In The ALGeBRA Steering Group for breast cancer research blog, Will Kendall talked to Camarie Welgemoed, a clinical research fellow in radiotherapy, about her experience and what she has learned about the value of working with the public, lessons that were hopefully shared by 185 blog readers in the first month!
5. Last but not least, The Inflammatory Bowel Disease Patient Involvement in Research Day was a national event bringing together 80 patients and 30 researchers, and the blog attracted 167 readers in one month. The organisers are planning to run another event next year and are looking for collaborators around the world.
In 2019 we are planning more informal opinion pieces, as well as articles on public involvement in Asia, a service users’ perspective on being involved in research, and a case study of public involvement in a clinical trial. If you have an idea for a story get in touch at ppi@imperial.ac.uk
Happy new year!
You can follow us on twitter @Imperial_PERC and subscribe to our blog on the right-hand side here.