Patient and Public Involvement Opportunities

  • CRIISP, the Consortium to Research Individual, Interpersonal and Social Influences in Pain, is researching the ways thoughts and feelings, personal relationships and lifestyle can affect persistent pain (pain lasting more than three months).

    They are looking for people who live with persistent pain or care for someone who does to get involved in the research. There are roles to accommodate a wide range of levels of commitment, and experience of research involvement is not required.

    Please click here to learn more about the project

    The consortium’s aim is to discover how these psychological and social factors affect the ways persistent pain starts, keeps going, gets better or gets worse, using a range of techniques including health data from large cohort studies and studies using new technologies and wearables. In doing so, they hope to find ways to prevent persistent pain from happening and reduce the negative effects that pain can have on people’s lives.

    Please click here to visit the project website

    Attend a ‘Find Out More’ event

    The consortium is running ‘Find Out More’ sessions in late April/early May for people who might be interested in getting involved. For more information or to book your place at one of the sessions, please email criisp.ppi@uwe.ac.uk.

  • Alleviate, the new Health Data Research Hub for pain research, are looking to create a community of people living with chronic pain, or who care for people with chronic pain, how are interest in research and data.

    Alleviate is aiming to improve how pain research data is stored, linked and used to improve future treatment and care, and will carry out involvement and engagement throughout their activities.

    Click here to view the involvement flyer

    The Hub has different options for how to get involved: 

    • Involvement in meetings – a patient advisory group who will take part in online meetings with the research team
    • Involvement in surveys – a community of people who are interested to take part in online polls, surveys etc., to provide feedback input into the project
    • Engagement – a community of people who are interested in the project and would like to receive email newsletter updates

    Click here to join the Alleviate pain community

  • The Healthy Data consultation is now LIVE! Healthy Data is a national consultation to gather citizens’ views on the use of their health data for research and health care planning.

    This project brings together two initiatives which aim at facilitating the access and use of health data to improve health, care and services through research and planning. The two initiatives are:

    • the Belgian project “Towards the development of a national health data platform” (AHEAD)
    • the European initiative “Towards a European Health Data Space” (TEHDAS).

    Within TEHDAS, Sciensano (Belgium) the Health Data Hub (France) and the NHS Confederation (United Kingdom) compose the working group iCitizen, which has been set up to provide recommendations on the role of citizens in the future European Health Data Space, particularly on the involvement of patients, citizens, and their representatives on the reuse of health data for purposes beyond individual care.

    The preliminary stages of the project showed that there was a general lack of clarity for citizens regarding the reuse of health data for purposes beyond individual care. Initial research on citizens’ perceptions and involvement with health data also highlighted the very limited number of existing consultations conducted on the topic among European populations. The Healthy Data e-consultation has therefore been constructed based on two aims:

    • to listen to citizens and patients’ views on health data secondary use and sharing and on the role, if any, that they would like to play in the management and use of their related health data.
    • to increase citizen awareness, engagement and empowerment on the topic, so that everyone can, if they chose, develop informed opinions and take an active role in the use of their health data.

    The results will inform key UK and European digital health and research policies including the UK data protection reform proposals, GP data collection, ICS digital transformation and the development of the European Health Data Space.

    Click here to complete the survey

  • The Digital Interventions for South Asians with Cardiometabolic Disease (DISC) study is looking at inequalities in the use of digital healthcare, such as websites and phone apps, for cardiovascular disease and/or diabetes. This will help us understand how patient care in this area can be improved.

    To make sure that the research has the largest possible impact, it is important that the findings are accessible to the diverse South Asian communities in the UK. As such, the study want to involve people from a South Asian background, who have personal experience of cardiovascular disease and/or diabetes.

    The DISC study has launched an online survey to understand how and why people from South Asian background use health technology for cardiovascular disease and diabetes. All participants will have a chance of winning a £50 retail voucher as a token of the study’s thanks. 

    Click here to complete the survey

    If you have any questions, about the survey, please email the DISC Study team at: disc-study@ucl.ac.uk

  • The Secure Anonymised Information Linkage (SAIL) databank focus on anonymising and linking routinely collected data to help develop health and care research. To help them build and sustain public trust their Consumer Panel play a key role. As well as providing ideas on engaging with the public they advise on bids through approval processes, review information for a lay audience, offer advice on how to recruit reps to study steering groups and much more.

    The Consumer Panel have an ongoing recruitment process and are looking to ensure they have a range of people with different perspectives involved. If you’re based in Wales and are interested in getting involved, you can get in touch with the Swansea based team at dsbconsumerpanel@swansea.ac.uk

    Find out more and get involved

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 feedback@hdruk.ac.uk or call 07597 552671.

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!