Recruiting members of the patient and public panel for the Infections in Oxfordshire Research Database
Six-month initial membership averaging 0.5 days every 2 months
Pro-rata £150 per day / £18.75 per hour
The closing date for registering your interest is 5pm Friday 21 July 2023
NOTE: The information and online forms below are also available as downloadable Microsoft Word or PDF file packages
Jump links
- Summary of role
- Big Data and Me
- About the Infections in Oxfordshire Research Database (IORD)
- Patient and public panel members: role description
- Online form to register interest
Summary of role
- Are you interested in ‘big data’?
- Are you interested in how routinely collected health data is used to improve how we treat people with infection-related illnesses in the NHS?
- Would you be prepared to be a “critical friend” and ask questions about what we are doing, even if you feel they may not be important?
- Can you listen to and respect differing opinions?
The “Big Infection Diagnostics and Modernising Medical Microbiology” Theme of the Oxford Biomedical Research Centre is looking for new members to join our patient and public panel and work with us to make sure that public views on how we run the Infections in Oxfordshire Research Database are heard and acted on.
Since 2009 the Infections in Oxfordshire Research Database has been using real world electronic health record data from across Oxfordshire to improve how we manage infections in the NHS. The database has been approved by a Research Ethics Committee and the Health Research Authority. It has looked at over 80 different kinds of questions, using health data with patient names, addresses, NHS or hospital numbers and date of birth removed. Instead, records are identified by a specific random number. This means that we know which records belong to which people, but we do not know who they are.
Our patient and public panel is set up to support transparency, challenge us openly and honestly and hold us to account for how we manage the database on behalf of the people in Oxfordshire. Members do not need to have a long-term condition or be a regular user of health or care services but should be interested in ‘big data’ and how it is used.
You will need to let us know that you are interested using the form below by 17:00 Friday 21 July 2023. If you have any difficulties accessing the form, please email iord@ndm.ox.ac.uk for help.
About big data
It is impossible to pick up a newspaper or magazine without being confronted by ‘big data’. But, while it is easy to assume that ‘big data’ is always about companies trying to make money out of information about us, this isn’t always the case.
For example, if you have been to an Oxford hospital or had a blood test done at your Oxfordshire GP during the last 20 years, anonymised data about your care will have helped researchers at Oxford University to learn more about infections. And the more we know about infections, the better we can treat them.
This data is used to construct the Infections in Oxfordshire Research Database (IORD). Unlike NHS databases, IORD does not contain patient names, addresses, NHS or hospital numbers, or dates of birth. Instead, records are identified by a specific, random, number. This means that researchers know which records belong to different people, but not who they are.
The information stored in IORD has already helped us to:
• Find out that a new super-fungus, Candida auris, can be spread between patients by equipment that is used multiple times and is hard to clean (like armpit thermometers), but is not spread by healthcare workers. Removing these thermometers stopped an outbreak in our hospitals.
• Learn that the biggest increases in bloodstream infections caused by E. coli are affecting people who have not recently been in hospital. We have also learned that the use of strong antibiotics outside hospitals may be increasing E. coli’s antibiotic resistance. Having learned this, we have begun to focus on community healthcare rather than hospital healthcare in an effort to prevent these infections.
• Show that the types of bacteria that cause bloodstream infections have similar rates of antibiotic resistance to types of bacteria that cause other infections. This means that low and middle-income countries can just use cheaper and simpler tests on bugs from other infections to monitor their rates of resistance and work out how to reduce it, helping us all in the future.
With its information about the microbes found in clinical samples, the infections people come into hospital with, and the antibiotics they are treated with, IORD is an incredibly rich resource that can help to improve NHS healthcare. IORD can only be accessed by researchers from universities – no commercial companies are allowed to use the database. If you have any questions or concerns about your data, or your relatives’ data, being used for this research, please email IORD@ndm.ox.ac.uk. Please also get in touch if you would be interested in talking more about this with us!
About the Infections in Oxfordshire Research Database (IORD)
The Infections in Oxfordshire Research Database has been working since 2009 to use real world electronic health record data from across Oxfordshire to improve how we manage infections in the NHS. It has been approved by a Research Ethics Committee and the Health Research Authority.
IORD includes routinely collected electronic data from hospital and GP records, covering about 1% of England. It includes information from two different sources.
- The Oxford University Hospitals NHS Foundation Trust Clinical Systems Data Warehouse which contains information on:
- admissions to hospital and what happened to the patient in them (for example, did they have surgery or other hospital procedures), measurements of how the patient responded (for example, temperature and blood pressure), and antibiotics and other drugs they were given
- visits to outpatient clinics and A&E
- results from blood tests, other clinical samples and scans, including blood tests taken at GP practices
- which GP practice the patient is registered at, and what region of the county they live in (not address or town)
- sex, ethnicity and month and year of birth (not date of birth).
- Research data from detailed studies done by the Big Infection Diagnostics and Modernising Microbiology Theme of the Oxford National Institutes of Health Research Biomedical Research Centre. For example, what specific type of microbes might have been causing infection and how they are related to other microbes we have found in the region.
The database is funded by the Oxford National Institutes of Health Research Biomedical Research Centre.
IORD has looked at over 80 different kinds of questions, using health data with patient names, addresses, NHS or hospital numbers and date of birth removed. Instead, records are identified by a specific random number. This means we know which records belong to different people, but not who they are. Examples of the kinds of questions we have looked at are:
- How have infections caused by different microbes, and infection-associated syndromes (like pneumonia or sepsis), changed over time in Oxfordshire, within and outside the hospital? Are new microbes starting to cause problems?
- What factors increase the risk of getting an infection with different microbes or getting infection-associated syndromes?
- How serious are infections with different microbes or infection-associated syndromes? Are some becoming more or less serious over time? Are particular strains of a microbe becoming more dangerous (or “virulent”), and how might this happen?
Subsets of data (not the whole database) are released to researchers on the basis of a short (2-3 page) research proposal describing what they want to look at and what data they need on what kind of person. These proposals are reviewed by a team including a majority of people independent from the database, such as people who represent hospitals and GPs, and members of the public. No commercial use of data is allowed.
Patient and public panel members: role description
What are we looking for?
We are looking for 3-5 new members to join our patient and public panel.
The role of the patient and public panel members
The members will sit on the IORD patient and public panel. The panel’s role is to:
- Look at research proposals and outputs and give their views on the plans for analyses, the findings from these analyses and how these should be made public, and in particular to raise any concerns about the use of health data in these research proposals.
- Review and comment on other documents related to the database (e.g. websites, public consultation documents).
- Help make sure that patient and public perspectives on the use of health data for research are considered and that we are transparent about what happens to people’s health data
- Provide ‘critical friend’ challenges and hold us to account for how we manage the database.
- Champion and advocate for increasing patient and public awareness of the database’s existence and findings.
- Respect the views of other panel members at all times, and respect the confidential nature of discussions when it is made clear that this is needed.
Skills and experience required
- Interest in ‘big data’
- Interest in how routinely collected health data can be used to improve how we treat people with infection-related illnesses in the NHS
- Comfortable with speaking in groups, online and in person, and one to one
- Ability to understand and assess a range of information
- Ability to display sound judgement and objectivity
- Experience of interacting with a variety of people from differing backgrounds
- Awareness of, and commitment to, equality, diversity and inclusion
- An understanding of the need for confidentiality
- Commitment to the seven principles of public life – sometimes known as the Nolan Principles: selflessness, integrity, objectivity, accountability, openness, honesty, leadership
- Note: Members do not need to have a long-term condition or be a regular user of health or care services
Time commitment
- Membership of the panel is for six months in the first instance, at which point membership will be reviewed
- The time commitment averages no more than half a day every 2 months
- Panel meetings will be once every 6-12 months, but the frequency of meetings will be reviewed by the panel and determined by them. Meetings will usually take place online and normally last for one hour. Slots will be offered during and outside working hours to accommodate members’ preferences.
- There may be papers to read for these meetings, and additional time for preparation is included in the role.
Support & payment
- We will meet with all the new patient and public members online to provide background information about the project.
- Pre-meeting briefing documents will be provided where needed.
- Patient and public members will be paid for time spent in meetings, and preparing for them, on a pro-rata rate of £150 per day i.e. £18.75 per hour. You do not need to accept this money if you prefer not to.
- Reasonable out of pocket expenses e.g. local travel costs will be paid.
How to let us know you would be interested
Please complete the form to register interest by 5pm Friday 21 July 2022. We cannot guarantee a place on the panel if the number of people interested is more than 3, but we will be in touch with everyone who lets us know they are interested to discuss both current and future opportunities
Discussion with the research team: 9-10am Thursday 6 July or 2-3pm Friday 7 July 2023 – online by Teams, please email iord@ndm.ox.ac.uk if you would like to join.
If you have any questions regarding the role, please contact us on iord@ndm.ox.ac.uk
Online form to register interest
The closing date for registering interest is 5pm Friday 21 July 2023
Developed from materials kindly shared by the NHS Insights Prioritisation Programme (NIPP) Transient Ischaemic Attack (TIA) project, a collaboration between the Oxford Academic Health Sciences Network and the Applied Research Collaboration Oxford and Thames Valley