Written by Terry Emery and Linda von Neree
You may be thinking £’s, $’s or even €’s? We’re thinking people – although one may very well lead to the other.
In rough statistics there are:
- ‘hundreds’ working in your area of research,
- ‘thousands’ at any one time looking for approval and funding of their projects, but
- ‘millions’ of past, present, or potential patients who can be involved directly or indirectly in your work and its outcomes.
Wouldn’t it be great if you could get your proposal endorsed by those ‘millions’? Obviously it’s impractical to contact such an immense group. What is both feasible and simple to use is an existing resource that lets you state clearly in your application that you have patients and public ‘on board’.
The Blood and Transplant Research Unit in Stem Cells and Immunotherapies at University College London (UCL BTRU) is coming to the end of a generous initial grant – but with a mass of opportunities for further translational work to develop the substantial achievements to date.
So taking our own medicine, that’s exactly what we did when applying for a funding extension to the current grant.
‘Working with the UCL BTRU Lay Panel on ways to integrate Patient and Public Involvement in the proposed research was very rewarding and led to some novel ideas to add real value to our programme.’ – Professor Karl Peggs, Director of the UCL BTRU
Involving patients and carers brings the lived experience to medical research. Credit: iStock.com/FatCamera
We turned to a resource that already had the groundwork in place – a Cancer Lay Panel in the UCL Hospital Biomedical Research Centre (UCLH BRC). From this we were able to build a dedicated UCL BTRU lay group. ‘We’ were: research staff. Today ‘we’ are: research staff, two Lay Representatives involved in strategic decision-making and an eight members strong Lay Panel adding invaluable insights as patients and carers affected by cancer and inherited blood diseases.
- Early on, we simply got everyone together for a lively discussion between researchers and panel members about our ongoing research that sparked great enthusiasm and improved understanding on all sides.
- Then, we had individual conversations between Principal Investigators and Lay Representatives about proposed research in the funding extension. This led to new and modified elements involving patients and the public. An ongoing challenge was how to involve patients in the mainly lab-based pre-clinical work. One way forward will be to build relationships with them during pre-clinical work to discover their perspectives and get input for early clinical trials.
- Lay Panel members reviewed proposed Patient Involvement in a written one-page summary – mandatory in many applications. This generated changes such as broadening the target audience and adding an evaluation of patient experience in an active first-in-human clinical trial to learn for future trials.
Even at this stage we got ‘spin-offs’ such as a Citizen Science project included in the funding application, where researchers and a patient will work alongside each other on a case study applying new insights to the patient experience retrospectively.
Our story here relates primarily to the specific funding renewal objective. However, once started on the path, many incidental benefits emerge for your own career and research. Many funding bodies require patient involvement in applications and lay representatives sit on committees reviewing funding and ethics applications. Patients and carers supporting your research cannot only increase your chances for funding, but it adds the experience of living with the condition to your work. It can help to highlight the difference your research will make to health care, ensure research is relevant to patients and done in an acceptable way. Finally yet importantly, as shown in our example, working with patients, carers and the public can be incredibly rewarding and motivational.
Worth a try? Start by learning more about Patient Involvement and existing resources such as PPIE advisory groups and colleagues with experience (see additional information below). Communicate your work so that it can be easily understood (that’s an important skill!) and think about what questions or issues patients could answer in regards to your proposed research. Plan sufficient time and budget to build relationships with patients and to get their views on your research proposal. For best results, be specific with what you want to do and why, when, how and who to involve.
‘Lay review of patient-facing documents and protocol design is one of the biggest bottlenecks to us getting trials set-up.’ – Dr Claire Roddie, Key researcher on CAR T cell therapy at the UCL Cancer Institute
So was the UCL BTRU funding application successful?
Well, the application went in at the end of October 2019 and everyone’s waiting with crossed fingers and bated breath. That’s ‘everyone’ including several professors and PhDs, alongside the eight butchers, bakers and candlestick makers of our lay panel. Watch this space for the good news to come!
*Update 3rd March 2020 – We are pleased to announce a successful BTRU funding extension application! Our bakers are now busy preparing a celebration cake to be cut after our PPI workshop on lab-based and early clinical research in March 2020.
Conversations about health care research.
About the authors
Terry is involved in several lay groups across UCL and UCLH. He has experience as a patient, PPIE in research, and a professional background in communication and marketing. He is a Lay Representative involved in strategic decision-making at the UCL BTRU.
Linda coordinates Patient and Public Involvement and Engagement at the UCL BTRU. She brings experience in health technologies developed with cancer patients, coordinated impact studies and Patient Involvement in research. Linda works closely with research staff and UCL BTRU Lay Panel members to plan and implement Patient and Public Involvement and Engagement ensuring high quality research that improves future health care.
For any questions and comments, please contact Linda: email@example.com
About the NIHR Blood and Transplant Research Unit in Stem Cells and Immunotherapies at University College London (UCL BTRU)
The UCL BTRU is an academic partnership with NHS Blood and Transplant (NHSBT) who supply the NHS with products and services for patients needing blood or organ transplantations. The UCL BTRU is one of four BTRUs funded by the National Institute for Health Research (NIHR). It focusses on improving haematopoietic stem cell transplants (transfer of stem cells, which lead to new blood cells in the recipient) and the clinical use of novel therapies both to treat inherited genetic disorders and to repair or strengthen the immune system’s ability to combat infection or disease. For more information, please visit: https://www.ucl.ac.uk/cancer/research/centres-and-networks/nihr-blood-and-transplant-research-unit-stem-cells-and-immunotherapies