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Your HRA Public Involvement Newsletter
Issue 25, December 2024
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Welcome
Hello everyone and welcome to your public involvement newsletter. To subscribe and to see previous issues of the newsletter, please visit the HRA website.
We have created a text-only version that should be easy to print. You can also view the newsletter as a webpage. Click on the link at the top of this newsletter and zoom in using the ‘Ctrl’ and the ‘+’ symbols.
For support with this, or if you need the newsletter in a different format, you can read our guidance, email the public involvement team at public.involvement@hra.nhs.uk or call on 0207 104 8161.
If there is something you'd like to include, or learn more about, do let us know.
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In this section, we give a short update on some of the involvement activity we have in progress and share new invitations to get involved in our work.
Last month, ten members of the public contributed to different aspects of the HRA’s work. Activities included:
- helping to recruit a new Inclusion and Organisational Development manager by taking part in an engagement exercise and scoring shortlisted candidates
- speaking about diversity and inclusion in research at a development day for members of our Research Ethics Committees
- attending an online meeting of the HRA Community Committee and a face-to-face seminar with the HRA Board
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In this section, we aim to respond to one of the questions we're asked the most – how has our work improved things for other people?
Becky Purvis, HRA Director of Policy and Partnerships, has written a blog about her experiences of supporting our Community Committee.
The Community Committee advises our Board and helps the HRA make better decisions, informed by different points of view. The Committee is made up of members of our Confidentiality Advisory Group, Research Ethics Committees and member of the public who shape our work through public involvement activities.
In the blog Becky says:
'Lots of our time as a committee has been focused on trying new ways of working so everyone can take part and we can learn from different experiences and perspectives. None of this is easy.'
Becky also writes about the importance of challenge and that it's OK to be uncomfortable:
'We are learning to create a space where people are comfortable to share their opinions and comfortable to be challenged on them without it feeling personal. This is not easy, and we don't get it right all of the time. Good communication and space to talk is at the heart of this.'
She also reflects on how the Committee's work will help make the HRA a more inclusive organisation for everyone that works with us.
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In this section, we share news about some of the HRA’s work that we think you may be interested in. You might also enjoy exploring the news and updates section of the HRA website.
Clinical trials aim to find out more about an illness, condition, treatment, therapy, or care. In a low-risk trial, medicines that have already been approved for use with patients are compared to see which might be the best option.
Before deciding whether to take part, you’d follow all the usual steps in seeking informed consent, this includes having a conversation about the benefits and risks in taking part, being provided information about the trial including how your data will be used and how to withdraw consent.
At the moment, you’d be asked to read, review and sign a consent form if you want to take part. To be more proportionate, we are thinking about changing this. We are proposing that if you decide to take part, the person recruiting you to the clinical trial would write down your consent in your medical records. And you wouldn’t need to sign a form.
We want to know if this proposed change would work for everyone, and if it’s an approach people can trust.
Tell us what you think in our short survey and feel free to share with others that may be interested.
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In this section, we share news of activities organised by other groups or organisations. To find out more about the activity, please contact the organisers directly.
To include a news item relating to public involvement in health or social care research, please email the public involvement team at public.involvement@hra.nhs.uk
The Declaration of Helsinki (DOH) is a statement of ethical principles for medical research involving humans, including research on identifiable human material and data. It was developed in 1964 by the World Medical Association (WMA) and is regarded as the most important document in the history of research ethics.
Following a global consultation, the WMA has accepted new changes to the (DOH). The revision process was designed to be collaborative, transparent, and inclusive. The HRA responded to both the first and second phase of the consultation, with input from members of the HRA's public involvement network and members of NHS Research Ethics Committees, developed in consultation with the UK's Four Nations Policy Leads Group.
We've summarised the key changes to the 2024 Declaration of Helsinki on our website.
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In this section, we provide information on the HRA, our people, and the other organisations we work alongside.
 You should have received an email from us recently asking you to tell us a bit more about you and what updates you would like to receive from us in the future.
To let us know about your preferences all you need to do is complete our short form.
If you’ve decided that you don’t want to keep receiving our updates you can also unsubscribe by clicking on the link at the bottom of this email.
Our opening hours are changing over Christmas and New Year. If you need to contact the HRA please check our website for information on which teams are contactable.
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In response to feedback and enquiries, we have brought together this section with important information for people involved in our work. Let us know if you think we are missing any key information.
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