At Cambridge Clinical Informatics we are committed to involving and engaging members of the public in our work.
We follow the guidelines on involving and engaging members of the public as provided by INVOLVE, a national advisory group that supports active public involvement in NHS, public health, and social care research. The term ‘members of the public’ includes patients, potential carers and carers, users of health and social care services, and representatives of patient support organisations. Although we are all potential users of health and social care services, health and social care professionals may have different perspectives or knowledge from the general public, and for research purposes their contributions may be seen as that of a professional. Public involvement in research refers to research-related activities that are carried out ‘with’ or ‘by’ the public, and the public can be involved at any point in the research cycle: from creating research questions, helping with the research proposal, designing and carrying out the study, collecting and analysing data, writing scientific papers or reports, sharing the study findings (results), and evaluating the study. For example, in 2015 we held group discussions in Cambridge and and Huntingdon to find out how the public could be involved in helping to set up a proposed new patient research registry at at Cambridge University Hospitals NHS Foundation Trust (CUH) – Addenbrooke’s and Rosie hospitals. Members of the public gave us their opinions on whether they thought the register was useful, and on how it could be put into effect.
Involvement in health is often mistaken for participation or engagement in research, thus we include the next two definitions.
Participation is when people take part in research studies, such as when they are recruited to medication clinical trials, or when they invited to complete a questionnaire as part of a study.
Engagement is when researchers provide information to the public. Researchers often engage with the public through events like science festivals, open days at research centres, raising awareness through the media, or spreading information on the findings of a research study. We take every opportunity to share our work, such as through Cambridge Science Festival, Pint of Science, BBC Radio Breakfast Show, BBC News, and Computing and Technology Magazines. Additionally, we share information through this website, Twitter and our community partners.
More information about involvement, participation, and engagement in research can be found at INVOLVE’s website: www.invo.org.uk