We are united. We are divided. We are together. We are isolated. We are community. We keep our distance. What strange and anxiety-inducing existence is this? We spend our days and nights in two perpetual states of being at the same time. Shifting restlessly, guiltily between them. The world has become smaller. Our homes smaller … Continue reading A tale of two viruses: COVID-19 and community – engagement and involvement in a time of national crisis (inc. links) #coronavirusuk
Many patients and their families fighting for the right care or seeking redress for wrong-doing will eventually find a regulator in their way. It takes courage, a strong heart and much tenacity to take on such organisations; these are the bodies that pull the levers, tug the strings but also seem to revel in complexity … Continue reading It says something when even the regulators get hold of public involvement @MHRAgovuk @HRA_Latest
Privacy campaigners have reacted with concern to the announcement by Health Secretary, Matt 'Prime Membership' Hancock, that the NHS and Amazon have done a deal to provide health advice through its Alexa smart speakers. The concerns need addressing although I feel a lot more chilled out about it than some of the things Alexa already … Continue reading A conversation with Alexa about public involvement in health – ‘Sorry, I don’t know that one.’ #digitalPPI
Hot on the heels of a glorious Glastonbury weekend and its sumptious selection of the best in music (apart from Chris Martin that is, who is is just a pain in the backside) I have decided that I need to get with some of the more recent trends and increase my impact. So I'm not … Continue reading Downloadable definition of the impact of public involvement in health research (feat. patients, carers and the public)
You don't have to worry about blinking and missing something in UK research if you are a patient. No. You could probably have a metaphorical afternoon nap. Or whole night's sleep. Perhaps even frozen cyrogenically for a few years. And still be waiting for some things to happen that are in yours and mine interest. … Continue reading Getting research results should be blinkin’ easy for patients. Survey launched by @HRA_Latest
The UCL Centre for Co-production in Health Research has issued a call for new pilot projects. It is looking for collaborators (organisations or groups of individuals) who are interested in delivering a co-production innovation, piece of research or intervention project. There is (£10,000 - £15,000) available to apply for per project. The deadline for applications is 14 June. … Continue reading UCL Centre for Co-Production in Health Research issues call for new pilots (£10-15k available)
Breaking News: 'Avengers' moviegoers in California may have been exposed to measles So said the CNN headline scrolling at the foot of the TV screen in my Montreal hotel bedroom last week. The warning was being given by public health officials to parents of budding young superheroes who may have attended the same showing as … Continue reading Avenging the measles outbreak requires local heroes not superheroes
This blog was originally inspired by a passing reference I saw in a research proposal. In talking about their plan for public involvement the applicants referred to a 'Senior Academic Lead for Patient and Public Involvement...' It got me wondering. OK, initially, it spurred me on to sit down at my computer keyboard and huffily … Continue reading Musings on the role of senior academics in supporting public involvement in health research in universities and institutions
Should we have a meaningful vote on the definition of public involvement in health research? Better still a series of indicative votes to find the most preferred definition? Perhaps it would be simpler to go to the polls on revoking the INVOLVE definitions we have grown to love (or hate, depending on your point of … Continue reading Should we have a meaningful vote on the definition of public involvement in health research?
'I was averaging out at two meetings about digital per week before Christmas,' said my friend over coffee. As she said it I mused to myself that it must be at least one a day by now. Yes, 2019 has heralded more meetings, events and conferences about data, digital and AI than votes about Brexit … Continue reading What’s this screwed up ball of paper got to do with health data research? Read on.
According to the recent national survey of people's experiences of being involved in National Institute for Health Research (NIHR)*, one in five patients, carers and members of the public told us they had been a 'co-applicant' in research. An equivalent number described themselves as being a 'member of a research team.' As a member of … Continue reading New guidance on what it is to be a public co-applicant in research launched by @NIHRINVOLVE @HRA_Latest and @NHSRDForum
Quite a few of Saturday's papers covered the health secretary's announcement that he wants the NHS to offer healthy 'volunteers' the option of paying to have their DNA analysed. The goal is to recruit 5 million volunteers resulting in masses of data which can be used by researchers to further understanding and develop new treatments. … Continue reading A view about the health secretary’s announcement on healthy volunteers and DNA tests
So there we have it. Earlier this week NHS bosses published their New Year's resolutions for the NHS. The 10-year NHS Long Term Plan promises more money, a focus on prevention and health inequalities, better use of digital and new technology, an emphasis on health in early-years and ageing well and much, much more. … Continue reading Missing in action – public involvement and the #NHSLongTermPlan
A Happy New Year. Here are ten things you may have missed while away. Or could possibly miss over the next 12 months if you don't know about them now! The NHS Long-Term plan (#NHSLongTermPlan). It's being published tomorrow. Complete with a section on research and innovation that will encompass a focus on public engagement … Continue reading While you were away…..10 things you may have missed in public involvement in health research since last year!
Design by Jaber Ahmed, words by Simon Denegri
Last week I trundled up to Leeds for a conference about patient data. Hosted by Health Data Research UK, the National Institute for Health Research (NIHR) and NHS Digital it brought together patients and carers, data scientists, researchers, health professionals and managers for a discussion about the future of data-driven health research. The conference started … Continue reading Public involvement is beset by headless chicken syndrome in too many organisations
National Feedback Survey: What’s it like being involved in NIHR research? #MyNIHRfeedback What has been your experience of being involved in NIHR research? If you are a patient, carer, service user or member of the public who has been involved in our work then NIHR would like to know. You may have helped design a … Continue reading National Feedback Survey: What’s it like being involved in NIHR research? #MyNIHRfeedback
Two weeks ago I spoke at the 'International Perspectives on the Evaluation of PPI in Research' conference which is taking place in Newcastle right this moment. It was great to see so many people there - old and new friends. An engaged and lively audience. I am only sorry I could only stay the day. … Continue reading Public involvement in research: it’s academic isn’t it? (Notes from a growing movement)
The Patient Story First they wouldn't let us into the room. Then we were allowed to sit at the back, but not say a word. Eventually we could sit in the audience and put our hands up. Occasionally we got asked to say something. When we did begin to ask questions, people laughed at us … Continue reading The patient story is dead. Long live our story.
I suspect we all have moments when we will question the point of public involvement. Even those of us who are die-hard advocates. In the same way that the clergy seek to better understand their faith. Or scientists question Mark Walport. Researchers who are at the beginning of their carers are more entitled than most … Continue reading Public involvement in research: what’s the point? #researchertraining @UCLHresearch