Panel membership
No specific experience is required for you to be involved in research, and all previous and lived experience is valuable – the strength of our panel for researchers is the wide variety of backgrounds and experiences of our members. We particularly need the views and experiences of people who have little or no experience of research at all – like most people! CUH PPI panel membership is open to anyone who:
- Lives in the East of England (or has a personal connection to CUH)
- Is aged over 16
- Can receive PPI opportunities via email
AND:
Is not currently employed in health research (including commercial research), the pharmaceutical industry or the media
In order to help our researchers ensure that our research is relevant to our local population and meets their needs, we think it is important that members of the CUH PPI panel are based in the East of England or that they a personal link to CUH or our research through other means (usually through treatment at our specialist services).
Similarly, researchers need the views, perspectives and experiences of people from outside of the research sphere, so panel membership is not routinely available to researchers or people working in research, who have other means through which they can influence and improve research.
Finally, panel members have access to information and materials that may contain confidential information about research that is not yet in the public domain, or that may provide a material advantage if it were accessible to competitors – as such, members of the media, commercial research organisations or academic researchers are not typically able to join.
However, we do recognise that some health researchers and people working in these industries have specific lived experience that they can bring to research – if you currently work in one of these occupations but have lived experience of a health condition, we will discuss with you the best way for you to be involved in our research.
Panel membership
Panel members can choose what types of activity they they would like to hear about (see the ‘What do panel members do?’ section for more information) by selecting from the options on the joining form.
You are free to choose which projects to respond to – we have some members who respond to nearly all of the opportunities sent to them, and others who choose to respond to just one or two projects per year as their time and interests allow. Your contribution is valuable however much time you can give!
Membership of the CUH PPI panel is completely voluntary and members can leave the panel at any time, without having to give a reason. If you would like to resign your membership, please let the PPI coordinator know via email. It is also possible to ‘pause’ membership (stop being sent opportunities for involvement) for up to a year and to change the type of activities you wish to be contacted about at any time, by letting the PPI coordinator know.
Membership expectations
We hope that you will find membership of the CUH PPI panel a flexible and easy way to be involved in research, and we do not place many requirements on our panel members.
In order to maintain your membership, panel members are expected to:
- Contribute to at least one document review per year (if you have opted to receive document reviews)
OR:
- Contribute to at least one discussion group per year (if you have opted to participate in discussion groups) – this may be through follow up comments if you are unable to attend any of the groups offered.
Panel members who have opted to receive both document reviews and discussion group invitations only need respond to one project from either category to retain their membership. Those who have not contributed to any projects will receive a reminder in October of each year that they need to contribute to at least one project for their membership to remain active. Those whose active membership has lapsed will not be sent more projects until they actively opt back in through discussion with the PPI coordinator or PPI lead.
We also expect that panel members will contribute constructively, honestly and sincerely, and that they will respect the views of others even where they do not agree. Negative feedback about any research project is welcome and warmly encouraged as it is essential to improving research.
However, feedback that is personally directed (at the researcher, patients or other public contributors) or that is derogatory or disrespectful may not be passed on, or may be edited beforehand.
When you complete the joining form you will be asked to acknowledge that you understand these requirements.