Patient and Public Involvement Opportunities
“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.” – Dr Amitava Banerjee, Associate Professor in Clinical Data Science
Become a Lay Member for the Better Care Steering Group
Health Data Research UK’s Better Care programme aims to improve people’s lives by equipping clinicians and patients in the UK with the best possible data-based information to make decisions about their care. We’re now looking for a patient or member of the public to provide strategic input by advising on the development, implementation, communication and ongoing monitoring of the Better Care Programme as well identifying priorities for future work.
If you’re interested in providing strategic advice to help drive and monitor progress on the Better Care Programme this could be the role for you.
Help develop an international consensus around multimorbidity
A research team, funded by HDR UK, are looking to develop an international consensus on the definition and measurement of multimorbidity (living with more than one health condition). As such they are looking for people to get involved by completing two to four surveys. The research team hope that the results will support and inform research, practice and policy around multimorbidity definition and measurement – a summary of the results will be available to you at the end of the study.
Taking part in the survey is voluntary. Please read the Participant Information Sheet (PIS) carefully before deciding to take part. The online survey can be accessed via the link at the end of the PIS (this is to ensure your acknowledgement of the study information prior to participation).
Become a Patient and Public Involvement Champion for Applied Digital Health
The National Institute for Health Research (NIHR) Applied Research Collaboration has 5 themes, one of which is Applied Digital Health. NIHR are looking for a member of the public, within Oxfordshire and the Thames Valley, who can champion the Digital Health theme and research.
This is a strategic role and Patient and Public Involvement Champion will be part of the decision making and guidance for the patient and public involvement that runs throughout the Applied Research Collaboration, as well as being a connection to the community.
Become a lay member on the Delivery Group for the Data and Connectivity National Core Study
We’re looking for an additional lay member to join the Delivery Group for the Data and Connectivity National Core Study UK. The National Core Studies programme is enabling the UK to use health data and research to inform both our near and long-term responses to COVID-19, as well as accelerating progress to establish world-leading health data and research infrastructure for the future. The programme comprises of six studies, with Health Data Research UK, in partnership with the Office for National Statistics, leading on the “Data and Connectivity” study .
The aim of this role is to bring a public/patient perspective and to raise any concerns and help shape the development and delivery of the study. You will have a direct impact on the study design and delivery and contribute to accelerating the progress of the Data and Connectivity study and the response to COVID-19.
Join the new Lay Advisory Group for the Data and Connectivity National Core Study
We are recruiting for four Lay Members as part of a new Advisory Group that will advise and support the Data and Connectivity National Core Study.
The National Core Studies programme is enabling the UK to use health data and research to inform both our near and long-term responses to COVID-19, as well as accelerating progress to establish world-leading health data and research infrastructure for the future. The programme comprises of six studies, with Health Data Research UK, in partnership with the Office for National Statistics, leading on the “Data and Connectivity” study .
Currently, there is a Data and Connectivity Delivery Group which reports to the leads of Data and Connectivity and then in turn into the National Core Studies Oversight Committee who ensure the programme of work meets the needs and is delivered across the UK. There are two Lay Members who sit on the Delivery Group and will act as direct liaisons between the Delivery Group and the Lay Member Advisory Group.
The aim of this Advisory Board is to bring a public/patient perspective, to raise any concerns and help shape the development and delivery of the programme. The Advisory Board Lay Members will not join the Data and Connectivity Delivery Group itself, however will provide opinions and advice to the Delivery Board through the Delivery Board Lay Members.
SAIL Databank Consumer Panel
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. You can get in touch with the Swansea based team at firstname.lastname@example.org
Diversity and Inclusion
At Health Data Research 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 email@example.com or call 07597 552671.
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 firstname.lastname@example.org