Welcome to the June 2022 edition of Getting Involved in Research from the team at NIHR Clinical Research Network (CRN) East of England!
Getting Involved in Research is a monthly newsletter packed with information about the many ways to get involved in research as a patient, research participant and member of the public.
If you haven't already signed up to this monthly newsletter and would like to continue receiving it, find out how to let us know at the bottom of this page.
Research Ambassador Project: Great new “easy read” resources created to explain how patient data is used
Paul Charlton, Patient Research Ambassador/Champion, has been working alongside adults with learning disabilities from Suffolk and Leicester, to create some new, accessible resources. These explain how patient data is used and the role of “big data” in research.
The project involved working with Thinklusive (thinklusive.org), Ace Anglia (aceanglia.com) and the Centre for Ethnic Health Research (ethnichealthresearch.org.uk) to produce these resources.
There's an easy-read guide, which is available in both English and Gujarati. There's also a talking text video where a narrator reads out the guide—see below for all the links.
These resources can be used by teams that need to communicate the way patient data is used to a range of different audiences.
In a recently posted blog on the useMYdata website (www.usemydata.org/about.php), Mary-Lou Owen and Paul Charlton reflect on an accessible information approach to understanding patient data. Their blog is called ‘Stories from the Heart’
Mary-Lou is an artist and disability rights activist from Suffolk.
Paul was a project tutor and is a NIHR Patient Research Champion with East Suffolk and North East Essex NHSFT.
The links:
New resources: explaining patient data in an accessible way | Understanding patient data (https://bit.ly/3y3PZZL)
Easy-read guide in English: there's two versions of the same document, one with Suffolk participants on the cover (https://bit.ly/3xEYr0h) and one with Leicester participants (https://bit.ly/3y1JJlt)
Easy-read guide in Gujarati (https://bit.ly/3xIFeuR)
Talking-text video in English (https://bit.ly/3xE5l66)
Inspiring stories about people who take part in research
The NIHR’s mission is to improve the health of the nation and turn discoveries into new treatments. You can read about how our work is influencing care, and making a positive difference to people in the UK on the NIHR website (at: https://bit.ly/NIHRwebsite).
Each month we will share an inspiring story from the NIHR website.
Changing behaviour to combat tooth decay
Extraction of decayed primary teeth is the most common reason for children under 11 years old to be treated in hospital. Whilst surgery removes the immediate problem of decayed teeth, it doesn’t change people’s behaviours to help prevent future teeth problems.
To tackle the problem early on, researchers have developed a low cost talking intervention which has been shown to prevent tooth decay in children. NHS dental nurses are now offered training in the technique, and commissioners in the North West have committed to introducing the intervention into dental services.
“I find that if we give lots of information and guidance at once it can be overwhelming for parents. In this trial, we helped families choose one or two actions. It might be to help brush their child’s teeth at night or stop giving a surgery snack at bedtime. It became their goal not ours and they could see a way forward.” Louise Morris, Senior Dental Nurse.
'The Treatment of Osteoarthritis: A Forward Look' conference, 23 June 2022, 08:30-16:00
We would very much like to invite your PPI groups to the Osteoarthritis event in Cambridge on 23 June, Paula Browne House (8:30 registration - 16:00): The Treatment of Osteoarthritis: A Forward Look The one-day event will focus on an interactive exchange of views and knowledge with our representative stakeholders eg: clinical, research, patient, public, industry, regulators, and funders.
There are three key themes, which we would like to develop during the day:
How can Musculoskeletal Disease be prevented between community, GP, and hospital settings?
How can we diagnose disease earlier and how can that help with New Treatments?
What are the challenges for new treatments in Musculoskeletal Disease?
As a result, we wish to expand and broaden the horizon of our research into Osteoarthritis.
We would like to welcome patients and public representatives in the audience.
Register for the conference here: https://bit.ly/3OjK4FC.
'The Cambridge Rare Disease Showcase', 6 July 2022, The Clayton Hotel, Cambridge, 18:30-21:00
After three years away, we are delighted to announce the return of our long-awaited Cambridge Rare Disease Showcase!
The Rare Disease Showcase is an event series that celebrates the innovative rare disease projects taking place across the UK and wider world. Our Showcases bring patient groups, industry, researchers, students and healthcare professionals together. By sharing the experiences, work, research and expertise of all stakeholders, we are creating an unstoppable movement that brings real change to those living with rare diseases.
The Cambridge Rare Disease Showcase is an event unique in nature. Alongside ample networking opportunities and complimentary food and refreshments, you’ll have the chance to hear first-hand rare disease stories proposed and presented by you, our delegates.
We invite you to join us – in person – to connect with the community and ensure no one walks their rare journey alone.
Find out more and book your ticket here: https://bit.ly/39Ayveb.
What is Health Research? - An NIHR Massive Open Online Course (MOOC)
Have you, or someone you know, ever wondered what health research is and what it involves? Do you want to know what the common myths are and explore ways to get involved? Would you like to hear from people who have taken part in health research and learn why they volunteered?
By joining this free access online course you will discover how research is improving healthcare; find out what’s involved in health research, bust the common myths surrounding health research and explore ways to get involved.
The next presentation of 'What is Health Research? starts again on Monday 16 May 2022. This course runs for 3 weeks and new learners can join at any time.
Opportunities to have your say & contribute to the way research is done
Citizen Science and Health survey on opportunities & barriers
Take part in a short survey on citizen science for health, developed by the Working Group Citizen Science for Health, established at the 2020 European Citizen Science Association (ECSA) Assembly.
The survey is multilingual and aims to document the current dynamics, opportunities and barriers of citizen science for health.
Have your voice heard by contributing to the survey. Find out more here: https://bit.ly/3mX6d0D.
Reflecting on NIHR research: tell us about your experience
A survey being conducted by University of Oxford, Sheffield Hallam University and the NIHR is looking to collect information on contributors’ experiences of NIHR research over the years.
Please complete the survey yourself if you are public contributor and/or share this information to others who may be interested.
The survey will be open until the end of July and hopes to capture responses from a diverse range of public contributors. Later in the year there will be opportunities for you to tell your stories in more detail through interviews and workshops.
By reflecting the breadth of people’s perceptions and experiences, this study will build up a rich and unique picture of what PPIE impact for the NIHR looks like over time.
Please contact Mark Taylor (mark.taylor@nihr.ac.uk) if you'd like to discuss any aspect of this study. Many thanks in advance for taking part and/or helping us to share the information.
Think ethics - have your say on ethics review for health and social care research
Today the Health Research Authority (HRA), working with partners in Scotland, Wales and Northern Ireland, has launched a public conversation (https://bit.ly/3y1w262) about how research ethics review could be changed to make it better for researchers, ethics committee members and people taking part in research. And we want to hear from you.
The consultation is part of Think Ethics (https://bit.ly/3bfbVZ9), our work to put people and ethics at the heart of health and social care research.
We want to see
fast, proportionate ethics review focused on key ethical issues in a consistent way
clear and concise study information designed with and for patients and study participants
a rewarding experience for diverse, skilled and committed Research Ethics Committee (REC) members
a streamlined and user-friendly service, attracting world-leading health research in the UK
We've been speaking to people working or involved in research to hear what they think works in the current service and what could work better, and now we want to broaden the conversation.
Based on what we've heard so far, we've developed some ideas on how we could rethink ethics review, and we want to know what you think. Our consultation runs from today until 23 September 2022.
There’s an online survey (https://bit.ly/3N1fW0l), and we’re also planning a series of workshops (https://bit.ly/3QyPqyl), so you can take part in a way that suits you.
Whether you are a member of the public, a current or former Research Ethics Committee member, staff involved in research review, a research, research organisation or you've taken part in a study, your opinion matters to us.
Inflammatory Bowel Disease research survey
The British Society of Paediatric Gastroenterology, Hepatology and Nutrition, the British Society of Gastroenterology, the James Lind Alliance and NIHR Children and Young People MedTech Co-operative are working together to find out what areas of digital technology for young people with Crohn's and Colitis need more research.
The group is made up of patients, carers, healthcare professionals, and researchers who are passionate about improving the care and quality of life of people living with inflammatory bowel diseases (IBD), such as ulcerative colitis and Crohn’s disease. Together, they are collaborating on a project called a Priority Setting Partnership (PSP) to identify the top 10 research priorities for digital technology in adolescents and young persons with IBD
They are asking people up to and including the age of 25 who are affected by IBD, their families, carers and friends, and health and social care professionals to help us identify the top 10 questions that need to be answered by research in this area.
Find out more about the survey here: https://bit.ly/3n4eQXo.
Participation opportunities
Cambridge Type 2 Diabetes study
The Cambridge Clinical Research Facility is looking for participants to join a clinical study in Type 2 diabetes. If you are a type 2 diabetic, non-smoker & not injecting insulin daily, you could be eligible.
For more information, please contact James Goodman: jdhg3@medschl.cam.ac.uk.
Royal Papworth COVID 'REGAIN' study
Royal Papworth Hospital are helping people with long-term side-effects from COVID The Royal Papworth Hospital is running the REGAIN study, and are looking for people to take part. The study is testing to see if exercise, rehabilitation and wellbeing support will help adults recover from long-term side-effects of COVID-19.
Were you treated in hospital for COVID-19 and discharged at least three months ago? Are you still having problems with breathing, sleep, concentration (“brain fog”), pain, fatigue, low mood and other problems? If yes, then you may be eligible to take part in this study.
For more information email: REGAIN@wariwck.ac.uk Or visit their website: https://bit.ly/3mYOyFI.
More young volunteers needed for Moderna Omicron COVID booster study
Thanks to the efforts of local research teams and volunteers across the UK, recruitment for the Moderna Omicron variant vaccine study is nearing its target of 3,000 participants.
The first part of the study looked into the effectiveness of a tweaked Moderna vaccine targeting the Omicron strain. This next phase of the study is open across multiple sites in the UK and looks to investigate a bivalent vaccine (one which targets multiple COVID-19 variants, including Omicron) from Moderna.
Sites are keen to recruit young volunteers from the age of 16 years old and above, with recruitment to the study closing at the end of this month.
To find out if you are eligible to join the study, visit the study’s website at https://bit.ly/3bfc1Qv.
Brain Injury MedTech Co-Operative opportunities to be part of research
There are a number of ways that you can participate and engage with brain injury research on the NIHR Brain Injury MedTech Co-operative website here: https://bit.ly/3y5e4Q2.
The 9th Annual Brain Injury Global Picnic will be held on Friday July 23rd 2021.
The Global Picnic is for everyone. By sharing your story or information about local issues with your regional media you will help raise awareness of brain injury in your community. By joining together on one day across the world we bring a united and stronger voice.
Paid opportunities to take part in research
Two separate opportunities have arisen for patients who have direct experience of:
Cancer
Alzheimer's Disease
These are paid opportunities (£50 for Cancer and £75.00 for Alzheimer's).
Further information on the Cancer research:
The NIHR is looking for up to six adult individuals (over 18) to participate in this opportunity. We’re looking for individuals who have direct experience with advanced solid tumours and are either currently in treatment or are in remission and who would be willing to review patient facing documentation.
Please note that in order to complete the review you will need access to an internet connection and laptop/desktop computer.
We are proposing to provide two weeks for the documents to be reviewed, but are sensitive to availability and therefore flexible with this.
The NIHR, on behalf of the life science company, will reimburse you £50 for your participation.
The NIHR is looking for 6 adult individuals (over 60), from all backgrounds, who are family members of or carers for people with Alzheimer’s disease and would be willing to review patient information documents and a video for patients about a clinical trial.
Once you have received the document and video you will have approximately two weeks to review and return your comments.
The NIHR, on behalf of the life science company, will reimburse you £75 for your participation.
Funding available for partnerships to improve health and care in your community.
The NIHR is inviting community groups to work with health and social care researchers to:
find better solutions for health and care problems which affect your community or the people you support
develop new ways for researchers and communities to work together.
Groups can partner with an NHS trust, NHS Body or another provider of NHS services in England to submit joint proposals for funding of between £50k and £150k over 6-18 months.
This opportunity is open to charities or community groups of all sizes, you can learn more about the vision behind this funding on our blog, and you can find more practical information about the opportunity, and the NIHR here. Finally, through our People in Research website, we are hoping to allow researchers and community organisations a way to find each other.
Find out more here: https://bit.ly/39F9kHy.
NIHR publishes framework to promote race equality in public involvement in research
The NIHR is proud to publish our Race Equality Framework - a self-assessment tool to help organisations improve racial equality in public involvement in health and care research.
The framework was created with integral input from Black African-, Asian- and Caribbean-heritage people. This input was vital as leading change in health and care research requires us to:
speak to the voices that are often not heard in the plethora of discussions about race
hear their trauma and pain, recognising the context in which this operates
ask them the question: ‘What matters most to you?’
act on what we hear and challenge ourselves to do better.
The feedback from our consultation events reveals that people from Black African-, Asian- and Caribbean-heritage communities do not expect perfection but also do not want tokenism. What they want to see are organisations doing their best to eradicate racial inequality in a respectful, open and transparent manner. That includes involving Black African-, Asian- and Caribbean-heritage people as equal partners. It also includes increasing the diversity of researchers and public involvement leads who can engage effectively with communities to build trust.
The framework has been trialled by sixteen research organisations including higher education, local government, the NHS and industry. You can read more about it here: https://bit.ly/3xEG3EX.
Important publications from the NIHR
NIHR Evidence May publication
Did you know you can follow research projects through the NIHR Journals Library?
The NIHR Journals Library publishes NIHR research alongside plain English summaries. The Journals Library is introducing a new publication model, meaning that publications are shared throughout the project (not just at the end) and are all linked together to tell a story. This helps to make NIHR-funded research available to evidence-users in a freely accessible, timely way.
Find out more here: https://bit.ly/39wTPRX.
NIHR Annual Report 2020/21 published
The latest NIHR Annual Report has been published and includes highlights from our work with the life sciences industry to respond to the COVID-19 pandemic and deliver business-as-usual activities.
Read the report here: https://bit.ly/3OsGE36
NIHR-funded research into long COVID
To date, more than £50 million of government funding has been invested in long COVID research projects. The bulk of this (£39.2 million) has been awarded to 19 projects commissioned through two dedicated calls for long COVID research.
These 19 studies examine the underlying mechanisms of long COVID, investigate symptoms such as ‘brain fog’ and breathlessness, and test possible treatments. They explore whether NHS services, such as long COVID clinics, meet people’s needs, and look at what people can do to optimise their own recovery.
Find out more about these studies and their findings so far here: https://bit.ly/3QCwGOO.
NIHR launches new Be Part of Research podcast series
Our new podcast series, aimed at members of the public, features informal conversations with researchers about interesting findings or studies and the important role the public plays in research.
In the first episodes, Professor Turi King interviews Professor John O'Brien on dementia research and Dr Rebecca Palmer on her Aphasia research project.
Listen to the podcasts at bepartofresearch.nihr.ac.uk/Podcasts/.
Useful Links
Find out more about health and social care research happening in your local area and across the UK by visiting the Be Part of Research website at bepartofresearch.uk.
────────── Would you like to become an NIHR Public Research Champion? If you are interested in becoming a Public Research Champion in your local area visit bit.ly/3uZiswR online, or contact Anne Sykes, Patient and Public Involvement Manager at CRN Eastern, by email at anne.sykes@nihr.ac.uk, or for a friendly chat about it with her telephone 01603 287670. ────────── Find out more about getting involved in dementia researchby visiting the Join Dementia Research website at www.joindementiaresearch.nihr.ac.uk. ────────── Find free online courses for members of the public from the NIHR hosted on the Future Learn website at www.futurelearn.com. The following courses about research are available:
Understanding the Research Behind the Pandemic: https://bit.ly/3CgyVyZ
Improving Healthcare Through Clinical Research: https://bit.ly/3AhVP8M
What is Health Research?: https://bit.ly/2VKfpLJ
────────── Discover the latest opportunities for public involvement in NHS, public health and social care research by visiting the NIHR's People in Research website at www.peopleinresearch.org. ────────── NIHR Evidence (at evidence.nihr.ac.uk) is a website that makes research findings accessible and allows you to read overviews of recent research on key topics and themes.
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Paul Charlton, Patient Research Ambassador/Champion, has been working alongside adults with learning disabilities from Suffolk and Leicester, to create some new, accessible resources. These explain how patient data is used and the role of “big data” in research. 
