Hello everyone 👋

Welcome to the latest newsletter email from me at Involvement at the Institute.

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In our last newsletter I mentioned that we have been working on a training programme aimed specifically for researchers to learn more and build their confidence in doing the work required within the remit of Patient and Public Involvement. I am delighted to say the programme is now live for sign up and this is designed to help some of those researchers who want to do more or start in PPI but lack the base knowledge and in some cases, confidence to get involved themselves.

If you want to see how the programme is marketed then you can take a look at our events page on the Institute’s website and if you’d like to know more about the programme, what it involves and our thinking behind the programme then please do get in touch.

Involvement at the Institute updates:

Fundraising for Tourette's Action

The Centre for CANDAL is hosting an afternoon fundraising event for Tourette's Action, with a chance to learn more about Tourette’s Action and the vital work they do in supporting individuals with Tourette Syndrome. This offers an opportunity to meet peers and colleagues at the institute, connect with people with a shared interest in the work of Tourette’s Action (and cake) and help them share information and raise some funds.

If you’re interested in attending please do register and that will help them know how many people to look forward to see.

National and local health, and social care and research information and events:

The Health Research Authority is seeking feedback for their Inclusion and Diversity guidance documents.

The guidance they have so far has been produced with the Medicines and Healthcare Products Regulatory Agency (MHRA) is a set of questions and supporting guidance for researchers to consider when they design clinical trials and clinical investigations.

This guidance is currently in a draft form and they are seeking feedback on this draft by way of a survey. You can access the survey to offer your thoughts on their work so far online.

The new NottAlone website launched on 10 October with an event at the Central Library, Nottingham on World Mental Health Day.

The NottAlone website has slowly built up from information to help signpost children and young people up to the age of 25 (and those who care for them), to advice and services for a variety of mental health issues. Now the website is expanding with a re-launch to incorporate everyone and offer an all-age platform for anyone needing mental health support and information.

View the NottAlone poster online here.

The NHS Clinical Entrepreneur Programme is a programme of workforce training with embedded innovation thinking and is now run by a team from Anglia Ruskin University.

The programme has launched a new part of the overall programme called the Patient Entrepreneur Programme. This is a pilot (test to see if it is successful) programme aimed at people with experience of an illness or condition who have developed a novel or new innovation to improve patient care.

You can find out more about this programme, how to apply and what the programme hopes to achieve on their website.

Opportunities to be involved in services and research:

Applied Research Collaborations are regional centres funded by the National Institute of Health and Care Research to support ‘applied’ health and care research’.

‘Applied research’ is research that responds to and meets the needs of local populations and we’re incredible lucky to have an active ARC here in the East Midlands.

The Applied Research Collaboration (ARC) East Midlands is seeking opinions from the public to help define the region’s future health and social care priorities. As our local ARC works towards securing additional funding beyond 2026, they want to make sure they begin these conversations about applied research as early as possible in this process.

They have launched a very short survey to gather public opinion on which health and social care issues should be prioritised in the years ahead. The survey will take no more than 10 minutes of your time, and all responses will be anonymised. Please note that the survey will close on 6 November 2024.

To share your views on these priority topics, please complete the survey here.

And finally...

I like to read the newsletter from the research journal Nature. If you’ve never taken a look and you’re interested in easily digestible but very solid multi-disciplinary science, I’d recommend it. I came across this short piece on one of their recent newsletters and I wanted to share. It is an obituary of sorts but it is good to see the pioneers of community, experience based research receive their recognition. The importance of this quote from neurologist Francisco Lopera is I’m sure, not lost on many of us in the network of people.

‘They don’t come to us; we go to them’

Neurologist Francisco Lopera, who has died aged 73, changed the course of research on Alzheimer’s disease by forming deep connections with communities in his native Colombia. In the 1980s, Lopera and his colleague, psychologist Lucia Madrigal, gathered a vast family tree of people who seemed to carry a mutated gene that raised their risk of early-onset dementia — and, in a few family members, rare protective genes that can delay the symptoms by decades. Lopera created an exceptional level of doctor-patient trust that paved the way for a first-of-its-kind clinical trial, writes neuroscientist Kenneth Kosik, who was a long-time collaborator. “His philosophy [was]: ‘They don’t come to us; we go to them.’ It produced good science and goodwill.”

Until next time,

Kate