For this issue of the QUOD newsletter, we caught up with Karen Rockell, Patient Co-Director of the UK Organ Donation and Transplantation Research Network (UKODTRN) and member of the QUOD Steering Committee.
Karen’s story of how she became involved with patient and public involvement and engagement (PPIE) in transplant research stemmed from her own first-hand experience as an organ recipient. Karen’s professional life began in business research, and she developed a wealth of knowledge working at Cranfield University for 10 years. However, her career took a different path when, in 2010, she became a liver transplant recipient, which prompted her to turn her focus towards health research. She recalled how she had always been interested in health research from an early age when her mother became a research participant for studies into a condition that she suffered from. Later, when Karen was diagnosed with an autoimmune condition, her interest in patient involvement in medical research was rekindled as she wanted to better understand her illness, explore possible new treatments, and be able to advocate for herself. After her transplant, she donated her “old” liver for research and, following her recovery, went on to join the NHS Blood and Transplant (NHSBT) public advisory group, thus beginning her journey in patient involvement in research.
Karen is Patient Co-Director of the UKODTRN, whose founding partners include NHSBT, the British Transplantation Society, and Kidney Research UK, who currently fund the network. The UKODTRN was initially set up to tackle some of the challenges presented by small, single-centre research that ultimately delay the time taken to generate results and increase knowledge. The UKODTRN aims to encourage collaboration and communication between researchers and support them to join forces and submit research applications as multicentre studies, which can generate larger datasets and overcome the geographical and other barriers that may prove problematic for single-centre studies. The UKODTRN sets out to involve patients right from the very beginning of the research, and the election of two co-directors, one clinician (Dr Adnan Sharif) and one patient (Karen Rockell), ensures a balance between and combines these two different but very relevant backgrounds. Karen’s role is to build the patient involvement group (PPIE), which now has around 160 members. The PPIE group includes waiting list and transplant patients, living donors, and donor families, as well as carers and families. There are also 140 clinicians, allied health professionals, scientists, research designers, and health economists.
The UKODTRN is currently focusing on two main projects, both of which are patient-driven and patient-centred. The first aims to identify research priorities and involves asking transplant patients and their carers what they think would improve patient outcomes. Once emerging themes have been identified, they will communicate with scientists to establish how to ask the right research questions to address these issues. The second project aims to demystify research, with the objective of developing a research-knowledge community to create plain-language summaries of research published within the past couple of years. These summaries will be written by patients, as those written by researchers may not be fully accessible to patients. These will take the form of written summaries, infographics, posters, leaflets, webinars, and podcasts to ensure that accessibility needs are met and the research is brought to patients in a really relatable way. The intention is to close the knowledge gap in order to share science with patients in a way that enables them to better understand their conditions and advocate for themselves.
Karen first heard about QUOD at the British Transplantation Society conference in Belfast, Northern Ireland in early March 2020, which, coincidentally, was when the UKODTRN was launched. QUOD had a stand at the conference and it was here that Karen first met Prof Rutger Ploeg, who told her about the work that QUOD was doing. This initial encounter led to discussions about future collaborations and Karen joining the QUOD Steering Committee. Within QUOD, Karen’s focus is on PPIE and transparency, in terms of QUOD ensuring that they communicate back to the transplant community about the research that is being supported by the biobank. While it can be challenging to communicate complex science in plain language, Karen feels it is crucial that patients are empowered by being able to access and understand the science. The UKODTRN plans to feature QUOD in their newsletter as well as a webinar to keep their audience updated and informed about QUOD’s work supporting research.
Karen feels that QUOD fills a great need by aiming to improve and increase our knowledge and understanding of organs and transplantation, for example, through the identification of biomarkers and the changes that occur from organ retrieval to transplantation and beyond. It is by understanding these changes that we can improve outcomes.
While a typical week for Karen is extremely varied, much of her time is spent speaking to patients about projects that have been presented to the UKODTRN, looking at requests to get involved with PPIE, interacting with researchers, and talking to collaborators and charities, as well as the strategic direction of the network.
In her spare time, Karen swims and will be representing Great Britain in the World Transplant Games in Dresden, Germany in 2025. She describes the Transplant Games as a really good example of how to get transplant recipients back to being a thriving person after years of being unwell, it is also an excellent opportunity to make friends and celebrate life and donors.
The QUOD team is hugely privileged and grateful to have Karen on board, as her lived experience as a transplant recipient and strong desire to make research accessible to all bring a fresh perspective. We look forward to working with Karen on future projects and wish her the best of luck for the World Transplant Games next year.