Recognising the value of patient and public involvement in our research

Public Involvement

The NIHR Birmingham Biomedical Research Centre PI/PE activities are led by Dr James Ferguson, a liver transplant physician based at the Queen Elizabeth Hospital Birmingham and an honorary senior lecturer at the University of Birmingham. His clinical interests are long-term outcomes after transplantation, Primary sclerosing cholangitis and the care of young people with liver disease. He has published extensively and is involved in a number of research collaborations. He leads the National liver accreditation scheme IQILS aimed at improving the care for patients with liver disease. He has led on the establishment of an award-winning patient portal myhealth@QEHB at the Queen Elizabeth Hospital Birmingham.

The NIHR Birmingham Biomedical Research Centre recognises the value of PI/PE in all stages of our research and has already established active PI groups in our current BRU and in Rheumatology. The groups include Birmingham Rheumatology Research Patient Partnership (R2P2), The Birmingham 1000 Elders Group, and The Liver GI PPI Reference Group. They are involved in all aspects of our research programme and have led on projects identifying barriers to accessing research and assessing whether patient information sheets inform participants involved in research. To create a step change in our PI/PE activity we will build on this successful platform through a number of key measures:

The BRC offers new opportunities to expand and integrate new and existing PI/PE groups. Alongside the Liver PI/PE group, we will work with the successful Birmingham Rheumatology Research Patient Partnership (R2P2) and establish new patient, public and service user groups for Inflammatory Bowel Disease. We will utilise Prof Ghosh’s expertise and leadership with Crohn’s and Colitis Canada and Crohn’s and Colitis UK. Alongside recruitment to these new groups, we will also expand the diversity of our existing groups to make sure that they accurately represent the profile of our patient populations in terms of age and ethnicity. Given the level of co-morbidities in inflammatory disease, cross-communication between these groups will be proactively supported, with shared newsletters, access to events, and patient representation from each group on the BRC Strategy Board. A dedicated BRC PI/PE Lead post will be funded through the BRC to support the integration and organisation of the groups.
The size of our PI/PE groups and/or geography should not be a restriction to participation, so we will develop a wider virtual network in parallel giving patients, public and service users access to information and research opportunities. Our activities will include the use of social media, web chats, video conferencing and other approaches to recruit and maintain engagement. The IT infrastructure at UHBFT is ideal for the development of a virtual trials network, and we will utilise our innovative patient tools such as the award-winning myhealth@QEHB patient records system (which already has over 14,000 registered members) to engage and support access/involvement in our research. A recently developed virtual clinic environment that has been co-designed with patients aims to reduce unnecessary visits and break down geographical barriers to accessing research.
We will utilise the James Lind Alliance (JLA) methodology to develop Priority Setting Partnerships for our disease areas. The JLA brings patient, carer and clinician groups together on an equal footing to firstly identify treatment uncertainties which are important to both groups and then works with them to jointly prioritise research questions. Whilst IBD has been recently supported, our other key areas of research will seek to use the PSP methodology within the first 18 months of our BRC’s activity.
It is increasingly recognised that clinical outcome measures (such as an improvement in liver tests) fail to capture the full impact of liver disease on a patient's life. Patient-reported outcomes measures (PROMs) help address this important deficit in the clinician's knowledge both in the clinical and research settings. PROs are collected using validated questionnaires which ask patients to self-rate their health status; providing important information regarding the patient’s perspective on the physical, functional and psychological consequences of treatment and the degree and impact of disease symptoms. We will work with Prof M Calvert to develop PROMs for our patients and then integrate them into an electronic capture system supporting early phase clinical trials.
These are critical for high-quality engagement and involvement and will be made available online as well as through face-to-face sessions with patients, the public and relevant charities/collaborating organisations/public bodies. While researchers will benefit from general PI/PE training on practice and evaluation, our lay contributors will be supported through training empowering them to proactively participate in discussions and research.
Our PI/PE lead will run regular events bringing together researchers with our PI/PE groups so as to support the development of new studies and allow patients to act as co-investigators delivering and disseminating research. They will also work collaboratively on topics such as the effective drafting of lay summaries for research proposals, publications and dissemination of findings.
We will continue to host a series of public awareness events. These have previously included research showcase days, local community events and meet the scientist days. We will also work with the University’s Public Engagement with Research Committee (PERC), chaired by Prof Alice Roberts, to deliver more innovative activities such as work with cultural organisations such as Birmingham Open Media on collaborative artistic exhibitions.
By working with organisations such as The British Liver Trust, Crohn’s & Colitis UK and Arthritis Research UK we will provide national access for patients and create more effective distribution channels for information about our research. We will complement this with PI/PE delivery groups such as the West Midlands PILAR group (supported by INVOLVE), NIHR RDS and CLAHRC, all of whom we have active links with.
We will develop key performance indicators (KPI) based on the major objectives of our programme, and set out an ongoing evaluation programme coordinated by our PI/PE lead. Using tools such as GRIPP, we will evaluate our PI/PE programme overall alongside its role within individual studies. Year on year we will publish an action plan based on KPIs including the number of projects developed with patients, the number of patients actively involved as co-researchers, the diversity of our PI/PE groups, and metrics around online and physical engagement with our events and dissemination outputs.



For any question or queries regarding PI/PE, or if you wish to take part in our PI/PE programme, then please reach out to us using the email below: