Category: Patient and Public Involvement and Engagement

Project SAPPHIRE: Making the most of precious health data

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…)

Our Co-production Journey: From Sandpits to Bird Boxes

A picture of yelllow bird boxes at a pop-up event.
Image credit: James Retief @jretief11

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…)

Why patient engagement matters

A female doctor talking with a colleague

By Dr Lisa Aufegger, IGHI Research Associate

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.

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The Research Partners Group: A year on

By Alex Taylor, Research Partners Group member.

“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!

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Part II, The next five years

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…)