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Patients and the public helping with research

Calling all donors! Would you like to have a say in the kind of research we carry out?

Here at NHS Blood and Transplant our scientists and researchers study a variety of healthcare issues, most recently developing the use of COVID-19 convalescent plasma for vulnerable patients. These studies need to be developed with the help of patients and members of the public, which is where you come in.

Patient and Public Involvement and Engagement (PPIE) is an essential part of healthcare research and our Patient and Public Advisory Group was developed to ensure that patients and members of the public are involved in all areas of research within NHSBT.

The chart below shows how widely drawn the Group’s membership is.

NHSBT PPAG members

You can find out more information about the work we do on our website.

How working with the PPAG has changed since COVID-19?

Initially, due to COVID-19, PPIE work started to slow down. However, PPAG members are now busier than ever! There are many COVID-19 related study proposals and grants that are being applied for by researchers which require PPIE.

Our working practices have also changed in line with new regulations. For example, we would normally host a half day face to face workshop, whereas now, we are hosting online video calls instead.

So far, these have been very successful and have enabled participants from all over the UK to join and take part in productive discussions. Recently, we hosted a Zoom meeting for kidney patients to discuss a study proposal and get their views on the feasibility and likelihood of patients signing up to be participants.

Who can get involved?

Anyone who would like to contribute to our areas of research. They could be patients, present and past, who have or had a particular health issue, which gives them insight into coping with the illness and dealing with its effects.

There is no shortage of research opportunities for our members to take part in. Their involvement is entirely self-driven and can be as much or as little as each person feels they can comfortably contribute.

What can you get involved in?

The type of support a PPAG member may be asked to provide includes, but is not limited to:

• Co-producing a research question; 
• Reviewing research documents and providing feedback;
• Working closely with researchers to manage research projects;
• Helping researchers disseminate research results at the end of a study;
• Joining online meeting to discuss researchers’ study proposals;
• Attending meetings and/or workshops to give opinions and feedback on topics or proposed research.  

A few examples of the support that our PPAG members have provided us with so far, include:

• Reviewing research documents prior to submission to an ethics panel and funding body;
• Attending and contributing to a workshop on the future of research in organ donation and transplantation;
• Joining a Zoom meeting to discuss research study proposals for the use of convalescent plasma in vulnerable patient groups.

How can you join?

The NHSBT Patient and Public Advisory Group is always looking for new members to join; the only requirement is you must be over 18.

To find out more and join, you can visit our website or email ppag.research@nhsbt.nhs.uk for more information. You can also follow us on Twitter.

The National Institute for Health Research (NIHR) INVOLVE website is a good resource for information surrounding Patient and Public Involvement and Engagement (PPIE), including; a jargon buster, the NIHR’s current work, a resource centre, communities and lots more.