By Joshua Symons, Director of the Institute of Global Health Innovation’s Big Data Analytical Unit
Patient data is precious. It’s a resource that many researchers and clinicians use to improve healthcare and therefore the lives of patients and health professionals. That’s why we want to make sure it’s used in a way that’s both effective and safe. (more…)
By Anna Lawrence-Jones (co-written with Jean Straus).
This article originally appeared on the UCL Public Engagement blog and has been reposted with permission. Visit the blog to read more about the UCL Centre for Co-Production in Health Research.
In my former job at Cancer Research UK, I organised Sandpit Innovation Workshops that brought together researchers, healthcare professionals and innovative thinkers to come up with novel research ideas to help solve a health challenge. Normally a three-day event, sandpits are a way to generate research ideas – which are inevitably more innovative and daring in this spontaneous environment – and get them funded quickly. But often, patient attendees were part of a panel which selected projects to fund, and were not part of the teams producing the ideas themselves. I often felt these were a lost opportunity for patients to have a greater role. (more…)
Patient engagement has become a key priority in today’s health and care systems. And some have argued it’s essential for the sustainability of the NHS.
Patient engagement (PE), the involvement of patients in their medical process, is not a new concept. It first appeared in the late 80s, when the US Food and Drug Administration brought together patients, government, industry, and academia to identify and remove barriers to successful HIV drug and treatment development. Since then, PE activities have blossomed across clinical and non-clinical areas, and generated meaningful insight into and impact on quality improvement in healthcare service and delivery.
“I would recommend highly [the RPG] to other researchers”
– Researcher quote 15/08/2019
Just over a year ago my colleague and fellow lay member John Norton wrote a blog post introducing the newly-created Research Partners Group (RPG): An insider’s view of patient and public involvement. We’re a diverse group of 11 patients, carers and members of the public brought together by the Imperial Patient Safety Translational Research Centre (PSTRC). We were set up to help review research projects and researchers’ plans for involving people like us in their work.
Well, here we are just over one year later, and we have been very busy!
I am delighted to have been appointed one of the first 11 patient, carer and public members (lay partners) of the new Research Partners Group (RPG) of the Patient Safety Translational Research Centre (PSTRC).
What a mouthful of terms! But, essentially, the RPG is one of the new structures the PSTRC have put in place to help ensure appropriate involvement of patients, carers, and members of the public across its research projects. The RPG will be the first point of call for researchers and will scrutinise the patient and public involvement plans in research projects and act as a link to other lay partners. The “P” is very important, as I strongly believe that patients and the public should be equal “partners” in research and care. (more…)
Let me start by describing an average episode of care in 2017. John is in his mid-50’s, a smoker (average 10 cigarettes a day), drinks regularly (around 2 pints of beer or 2 medium glasses of wine on his heaviest drinking day) and does not exercise frequently. He is overweight and has a family history of heart disease. John booked an appointment with his local GP because he had been having worsening chest pains over the previous five weeks. His GP referred him to the local rapid access chest pain clinic, where he had tests such as an ECG. The tests did not show any abnormalities and John was sent back to his GP with a note asking his doctors to continue monitoring him in case his symptoms worsened. His GP received the summary but did not schedule a follow-up appointment with John because the practice was short-staffed that day. (more…)
I attended the Communications Strategy event on 30 May 2017, which brought together a combination of patients, carers, members of the public, healthcare professionals, researchers and PSTRC staff members who work in communications. We discussed a wide range of issues and had the opportunity to feed into a draft communications strategy for the NIHR Patient Safety Translational Research Centre.
As a servicer user who has been involved in research work and was a Collaboration for Leadership in Applied Health Research and Care Research Fellow (2016), I was privileged to be invited to be part of the NIHR Imperial Patient Safety Translational Research Centre‘s (NIHR Imperial PSTRC) Patient and Public Involvement and Engagement (PPIE) strategy working group.
The aim of the working group was to bring together researchers, healthcare professionals, patients, carers and public members to discuss and improve the draft PPIE strategy for the Centre. The event explored the practicalities of implementing the strategy and discussed how patient and public representatives could be supported in getting involved in research.
I was first properly introduced to the term “patient and public involvement and engagement” five and half years ago, working with research grant applications at Wellcome. I was one of the lucky people to be part of the first intake of their Graduate Development Programme, where I got to work in four departments for six months each. The organisation opened my eyes to how important it is to get the public interested in science and the vast possibilities of how to do so. At lunchtimes I had the luxury of going to lectures and exhibitions in the Wellcome Collection next door, which would always be bustling with curious members of the public.(more…)