Patient and Public Involvement Opportunities

  • The Patients Association are partnering with Roche Diagnostics UK to hear from patients about their understanding and experience of diagnostics in the NHS.

    They’ve launched a survey for people who have used NHS services in the last six months, which will take about 15 minutes. Your answers are anonymous.

    Diagnostic testing services are the different tools and tests used to understand what might be wrong with you. They’re an essential part of care because healthcare professionals need the results to choose the right treatment.

    To complete the survey, follow the link in the button below. If you prefer not to take the survey online, call their free helpline at 0800 345 7115 (weekdays 09:30 – 17:00), where advisers will collect your answers anonymously.

    The Patient Experience of Diagnostics Survey is part of a collaboration between the Patients Association and Roche Diagnostics UK. Learn more about the collaboration and the survey on their website.

    Take part in the survey

    Please note: No honoraria are available for taking part in this opportunity. If you have any queries related to this survey, please get in touch with them using their enquiry form.

  • Heart disease is a collection of different conditions that can affect how the heart works. It includes issues such as coronary heart disease, irregular heart rhythm, heart failure, and problems with heart valves.

    Digital health means using technology and digital tools to make healthcare better. It has the potential to change the way we take care of people with heart disease. However, there are still many things we don’t know about how digital health can help improve heart disease care and management.

    Digital Health for Heart Health is a partnership between Edinburgh Napier University, Robert Gordon University and the James Lind Alliance. They want to bring together those directly affected by heart disease – patients, carers, family members and the healthcare professionals who care for them to identify and prioritise important questions about the use of digital health in heart health. By understanding these differTake part in the surveyent perspectives, they can make sure research and new developments in healthcare technologies are meeting the needs of people who stand to benefit the most.

    To do this, they have developed a short 15 minute survey, and they’re inviting you to share your views and opinions.

    Take part in the survey

    Please note: No honoraria are available for taking part in this opportunity. If you have any queries related to this survey, please email DigitalHeart@napier.ac.uk.

  • Alleviate, in partnership with Chronic Pain Australia,  the Advanced Pain Discovery Platform (APDP), and Pain UK, have launched the first UK National Pain Survey.

    The survey has been adapted from the National Pain Survey 2023, run by Chronic Pain Australia, and is targeted at those living with chronic pain.

    Chronic Pain Australia first started the National Pain Survey in 2009 to collect information and find out more detail from people living with, or caring for those, with chronic pain. Since then, it has grown and developed, and through this collaboration, has been adapted for the UK pain community.

    Chronic Pain (pain lasting for 3 months or more) affects 35-51% of the UK adult population (NHS Digital, 2019) and there remains an unmet need of recognition and treatment. Through this survey, which will highlight the lived experience and current issues impacting the UK chronic pain community, feedback will help inform various researcher and stakeholder audiences, to help determine direction and strategy and ultimately accelerate pain research.

    “Living with pain affects so many people in many different ways. Let’s use our collective voices to express what it means to us.”
    – Claire, Alleviate Pain Data Hub PPIE member

    This is an opportunity for your voice to be heard and make an impact on how chronic pain is perceived and managed. Please use the QR code, or click the link below, to take part in the survey and use your networks to encourage as many people as possible to make their voices heard.

    Take part in the survey

    Please note: No honoraria are available for taking part in this opportunity

  • We have a great opportunity from Dementias Platform UK. They were recently awarded DARE UK Community group funding for their AI Risk Evaluation Community. Part of the awarded work includes public workshops.

    Join Dementias Platform UK’s (DPUK’s) engaging workshop, on 30th November 10am – 3.30pm, to share your thoughts, concerns, and expectations about AI in healthcare research. They’re focusing on exploring research in Trusted Research Environments (TREs) and its implications for clinical settings, aiming to incorporate your valuable insights into shaping future standards.

    In this interactive session, they’ll delve into your perspectives, identifying key concerns related to different data types, AI methods, and collaborative scenarios. Don’t worry if you’re new to this — they’ll equip you with essential knowledge on TREs, AI models, their significance in healthcare, and the potential risks involved.

    Your voice matters! The day will focus on your verbal or written feedback which will steer future decision-making, standards and processes. Plus, here’s the exciting part: their workshop offers both in-person – Leonard’s Hotel, Swindon – and online attendance options.

    For in-person participants, lunch will be provided, and they will substitute your travel expenses, up to the value of £80. No honoraria will be provided.

    Join DPUK for a day of learning, discussion, and shaping the future of AI in healthcare. Together, you can make a difference!

    Join the workshop

  • Why did you choose to get involved in health data research? Why does health data research matter to you and what do you want us to achieve in future? If you have answers to these questions, you could help!

    We want to show that anyone can get involved in health data research if they want. To do that, we want you to share your story so that we can showcase the variety of different views, opinions, and thoughts in our HDR UK Voices community.

    You can get involved in lots of different ways! You could simply provide a quote and an image of yourself or you can do more. You can have a one-to-one interview with a team member, be photographed by a professional photographer, or take part in a video.

    Are you interested in taking part? Complete the form below to let us know.

    HDR UK Stories – Register Interest

Diversity and Inclusion

At HDR UK, we embrace diversity and all the ways we are different – visible and non-visible alike and believe diversity and inclusion fortifies each part of our Institute. We are committed to creating and running inclusive opportunities for patients and members of the public to get involved and truly engage with our work. We are actively building relationships with a variety of networks and populations to enable us to shape our work through a diverse and representative range of views and ideas and ensure the opportunities are run in a way that meets the needs of people we are looking to involve.

Health data affects everyone and we want to encourage everyone who has an interest in health data (including whether or not you are pro-access to health data) to get involved. If you have any questions or any ideas or suggestions on how we can improve the inclusivity of our patient and public involvement and engagement activities please get in touch at involvement@hdruk.ac.uk or call 07709 505 163.

Dr Amitava Banerjee, Associate Professor in Clinical Data Science:

“Research and healthcare data starts and ends with patients and the public. In fact, to have the highest impact, patients and public have a vital role to play at every stage.”

Have an opportunity to promote?

If you’re working on a project that would benefit from patient and public involvement and engagement that you’d like us to help promote, get in touch at involvement@hdruk.ac.uk.

Upcoming Events

Find out about our upcoming events and how you can get involved!

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