Below are some of the frequently asked questions regarding Patient and Public Involvement in Research. If the answer to your query is not addressed then please contact our PPI leads:
Andy Wragg, covering National Digestive Diseases Centre Biomedical Research Unit
Vikki Develin, covering NUH Research and Innovation, Arthritis Research UK Centres and Respiratory Medicine
Adele Horobin, covering National Hearing Biomedical Research Unit
What do we mean by involvement in research?
Involvement in research means Patients and Public working with research teams in a number of ways; to identify research priorities, as joint grant holders or co-applicants on a research project, designing and commenting on patients information/literature and helping disseminate research findings.
What do we mean by engagement in research?
Engagement in research means sharing information about research, either regarding specific studies or research in general; this can include activities such as:
I would like to involve patients and the public in the design of my study, can I access support and funding?
Like the Research Ethics Committee, NUH encourage all researchers to include patient and public involvement in their study. Speak to the Research Project Manager who is dealing with your study at NUH and they will be able to put you in touch with one of the PPI facilitators and explain how your research would benefit from PPI input.
The Research Design Service can help access funding for the PPI input into your study and suggest methods of involvement. For more information please see the RDS East Midlands website PPI leads at Nottingham University Hospitals work with patients, relatives and carers who are affected by a wide range of diseases and health conditions and want to help develop research. The PPIleads can assist you in putting together a group of people who can review participant information sheets to make sure they are in lay terms and easy to understand, offer feedback on the design of the research, in particular what is expected of participants to your study in order for the study to recruit participants successfully.
How do I recruit patients and the public and keep them involved?
There are a number of ways to recruit patients and public for involvement opportunities, you may already have links to local community groups/patients.
If possible try to choose a panel who have an interest in the topic you are researching. For rare diseases look to involve those with other rare diseases or those with conditions that similarly affect patients lives or with similar symptoms.
Be organised and dont waste the time of the people who you are involving, make time for introductions, get to know the group so they are comfortable giving their true opinion of the research and dont take any of their comments as criticism!
Keep your PPI group updated on the progress of the research (if they want you to) and offer to inform them of the outcome.
Will I need ethics approval?
Ethical approval is not needed where people are involved in planning or advising on research, for example as a co-applicant on a research grant, a member of an advisory group or developing a questionnaire.
However, if patients and the public are actively involved in undertaking the research study, and have contact with patients and/or their data, the study will need ethics approval as would any study involving patients data. This requirement is based wholly on the fact that patient data is involved rather than patients and the public being actively involved in undertaking the research. If patients and the public have contact with patients, or will be accessing personal data, they will require honorary contracts with the organisation.
For further clarification please see the Involve website.
If you are unsure of any issues relating to ethical approval then consult the NRES website or contact the East Midlands Research Ethics Committee on 0115 912 3399.
Is involving patients and the public time consuming?
Patient and Public Involvement should be seen as part of the research design process and input considered at the earliest available opportunity. Whilst it obviously takes time, the input from a PPI panel can make the difference between your research being a success and failing to recruit. If PPI sessions are organised and concise, it does not have to be time consuming.
Does PPI cost money?
There are costs associated with PPI input such as travel expense reimbursement, refreshment costs and you may also need to factor in staff costs to facilitate groups and carer/childcare costs to allow people to attend groups.
It is advisable to discuss what costs might be involved with your PPI/E Lead and refer to current policies on reimbursement.
If you are applying for a funding award, PPI involvement and costs can be incorporated and you are encouraged to discuss this with Charlotte Davies or Rob Spencer when applying for the grant.
How do I find out more?
If you are already working with one of the Research Project Managers at NUH, speak to them about including PPI in your study.
Both the Digestive Diseases and Hearing Biomedical Research Units and the Respiratory Unit have their own PPI leads and further information can be found on their websites: