Patient Involvement Blog

The latest news and views from our Director of Patient Involvement, Sophie Petit-Zeman

Curtain call

I’m pleased to report that the National Institute for Health Research (NIHR) is committing further funding to People are Messy (“PaM”), the play about Patient and Public Involvement (PPI) devised by Theatre of Debate which was originally supported by us and a Wellcome Trust Strategic Award. Simon Denegri, the National Director for Patients and the … Read more

Involvement in health research.

We are really pleased to have a guest blog from one of the members of Patients Active in Research (PAIR). Fraser Old tells his patient and public involvement (PPI) story below. Despite a life-long leisure interest in sailing, it took my wife’s arthritis to bring about an acquaintance with the 18th century naval surgeon, James … Read more

Trials and tribulations

The turn of the year is always a time for reflection as well as resolutions for what lies ahead. I was recently heartened by a colleague’s praise of our Patient and Public Involvement Working Group’s efforts to promote openness and transparency around clinical trials, and delighted when Nature invited us to comment on their recent … Read more

Patients and researchers unite

Since we launched www.patientsactiveinresearch.org.uk almost two years ago, it’s been good to see a steady stream of researchers posting their patient and public involvement (PPI) opportunities there, and a growing number of patients and members of the public signing up to get involved. The latest monthly stats show 441 users visited the site in November, … Read more

Identifying research priorities together: does it make a difference?

Guest blog by Sandra Regan, Patient Involvement and James Lind Alliance Project Manager, NIHR Oxford Biomedical Research Centre (BRC) This time last year, Sophie Petit-Zeman wrote a blog about how best to ensure that our James Lind Alliance (JLA) priority setting partnerships (PSPs) really do make a difference to what research is done. “The last … Read more

Who are the experts?

One of the central debates in patient and public involvement (PPI) is about how best to mix the activities of those seeking to understand the causes of and cures for ill health with the vast and varied experiences of those who have been or are unwell. Indeed, it is tackling this challenge within the (vast … Read more

Good news and gauntlets

The first email came in on Wednesday at 0.04, from the BRC Director: our BRC has been awarded new funding of almost £114m over the next 5 years. In parallel, the Oxford Health BRC gets £12.8m to support research into mental health and dementia. The total NIHR award to Oxford thus stands at £126m – … Read more

What can the JLA do for you?

I have written often on this blog about our James Lind Alliance (JLA) work, which uses a structured process to enable research priorities to be set by patients, carers and care professionals, rather than by pure researchers who may never see patients, or the drug industry. And I had been thinking it was time for … Read more

And the winner is……

I last wrote on this blog about our patient and public involvement (PPI) play in January, so haven’t had the chance to share the reviews written by Simon Denegri, NIHR National Director for Patients and the Public in Research and theatre critic Susan Elkin. We now have another review to share, as we are delighted … Read more

PPI: Back to basics

Over the last couple of months, I’ve had the pleasure of several “virtual” chats with Tom Dobbs, formerly an Oxford medical student and now a plastic surgery registrar in Wales. Tom has a special interest in patient and public involvement (PPI) in research and innovation within medicine and the life sciences, and has just written … Read more

Where evidence and anecdote collide

A couple of articles have recently led me to a familiar train of thought about how evidence-based medicine and anecdote can best be reconciled, and (a subsidiary worry), just how are we meant to know whether to believe what we read? In 2014, the European Journal of Preventive Cardiology published a paper called “What proportion … Read more

Clinical trials publication review out now

Back in August 2014 I wrote a blog about the AllTrials Campaign, and that our host Trust had signed up. As I explained, AllTrials calls “for all past and present clinical trials to be registered and their results reported. Today, Oxford University Hospitals NHS Trust joins the 79611 people and 502 organisations that have so … Read more

PPI takes centre stage

“The performance was amazing! Big shout out to the writer, the actors and Lauren [the facilitator]. Learnt a lot.” The national schools tour of People are Messy began in London on January 25th and the play arrives in the Thames Valley on February 1st. The above is a tweet (see @theatreofdebate) from a girl who … Read more

What do researchers really think about PPI?

This week saw the launch of a new section on healthtalk.org about health researchers’ experiences of involving patients, families and the public (patient and public involvement – PPI) in their research. In this guest blog, project leads Louise Locock and Anne-Marie Boylan explain what they found. This is a companion study to our previous work … Read more

Festive best wishes

A brief blog this week, and my first for a while, as I have been away. A rather major trip to “celebrate” a rather major (age-related…) milestone, which included a few days in the Atacama desert in northern Chile. You may remember it from news reports in 2010, when 33 miners spent 69 days trapped … Read more

The last steps matter too

We have a perennial conversation in Oxford about how best to ensure that our James Lind Alliance (JLA) priority setting partnerships (PSPs) really do make a difference to what research is done. There are certainly times when I worry that the basic JLA concept – that patients, carers and clinicians are best-placed to know what … Read more

Experimenting with PPI

This week’s blog comes to you from Joanna Crocker, Patient Involvement Impact Assessment Fellow with the NIHR Oxford Biomedical Research Centre What difference does patient and public involvement (PPI) make? This is one of the most complex and fascinating topics I have ever had the pleasure to work on, as well as one of the … Read more

Things aren’t always what they seem

I’ve been feeling nostalgic this week as 60 years of independent television are “celebrated”, with several reports focusing on the BBC’s mostly successful attempts to push their competitor’s launch off the front pages by killing Grace Archer in a fire. For those who may be (blissfully) unaware of the Archers, it’s the world’s longest running … Read more

Money money money

This week sees the latest instalment in a complex set of steps en route to offering patients and the public payment for their involvement in our work. We have now published online the policy by which we can – and indeed do – make this offer to all such members of Patients Active in Research … Read more

The play’s the thing

Back in November I wrote a blog about our emerging collaboration with Theatre of Debate – a play about Patient and Public Involvement (PPI) aimed at 14-16 year olds that will tour schools nationwide early next year, be filmed for cinema screenings and shown to public audiences in Oxford and elsewhere. As I said there, … Read more