A tale of two viruses: COVID-19 and community – engagement and involvement in a time of national crisis (inc. links) #coronavirusuk

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 →

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It says something when even the regulators get hold of public involvement @MHRAgovuk @HRA_Latest

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 →

A conversation with Alexa about public involvement in health – ‘Sorry, I don’t know that one.’ #digitalPPI

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 →

Getting research results should be blinkin’ easy for patients. Survey launched by @HRA_Latest

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 →

UCL Centre for Co-Production in Health Research issues call for new pilots (£10-15k available)

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 →

We need to talk about dying. Personal reflections. New campaign #TheDepartureLounge

Last night I attended the opening of the Academy of Medical Sciences' (AMS) wonderful new public dialogue project #TheDepartureLounge . It's all part of a campaign to encourage us to talk more about death and dying. The pop-up interactive initiative in Lewisham Shopping Centre really is great and the poetry on the night was a... Continue Reading →

Musings on the role of senior academics in supporting public involvement in health research in universities and institutions

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 →

Should we have a meaningful vote on the definition of public involvement in health research?

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 →

New guidance on what it is to be a public co-applicant in research launched by @NIHRINVOLVE @HRA_Latest and @NHSRDForum

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 →

A view about the health secretary’s announcement on healthy volunteers and DNA tests

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 →

While you were away…..10 things you may have missed in public involvement in health research since last year!

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 →

Public involvement is beset by headless chicken syndrome in too many organisations

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 →

National Feedback Survey: What’s it like being involved in NIHR research? #MyNIHRfeedback

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 →

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