UKCRN Patient and Public Involvement Working Group Members

Janet Darbyshire
Joint Director of UK Clinical Research Network (UKCRN) and Director of Medical Research Council Clinical Trials Unit (MRC CTU)

Janet has two roles that are relevant to her involvement in the UKCRN PPI Working Group. First as Joint director of UKCRN, Janet takes responsibility for the overall leadership of the PPI activity working very closely with Roger Wilson and Marianne Miles. Janet also takes the lead within UKCRN for clinical trials units, regulatory and governance, training and education, information systems and primary care.

Second, as Director of the MRC Clinical Trials Unit Janet strongly supports and encourages, the involvement of patients and the public in all of the research programmes of clinical trials, meta analyses and observational epidemiological studies. The Unit has a Communications Group which overseas all of the activities, which includes working with schools. Janet has been closely involved with PPI initially in HIV infection and subsequently in cancer and was a founder member of both the MRC Consumer Liaison Group and the NCRI Consumer Liaison Group.

Janet is committed to ensuring that effective PPI occurs at all levels of scientific activity, and she is delighted to be part of this Working Group.

Karen Inns
Consumer Liaison Lead, National Cancer Research Network (NCRN)

Karen Inns is the Consumer Liaison Lead for the National Cancer Research Network (NCRN) and is based at the NCRN Coordinating Centre in Leeds. The NCRN is part of the UK Clinical Research Network. The NCRN exists to improve NHS capacity to support cancer clinical research through the development of local cancer research networks which collectively cover England as well as working collaboratively with networks developed in Scotland, Wales and Northern Ireland. The NCRN focuses on the development of high quality research which benefits patients by improving the coordination, inclusiveness, integration and speed of cancer research.

Karen‘s role includes working closely with patients and the public, patient support organisations, researchers and scientists to support the meaningful involvement of patients and the public in the work of the NCRN.

Karen has experience at both national and local levels in Patient and Public Involvement in the healthcare and voluntary sectors. She previously worked at NHS Connecting for Health in stakeholder engagement. This involved working with clinicians and patients and the public to support the delivery of user friendly products and services for national use. Prior to that Karen was on secondment to the Department of Health working on projects to develop services to support patients’ experiences of using health services through the expansion of the Patient Advice and Liaison Service (PALS). She also supported the development of a national information strategy to help develop quality accessible patient information across all NHS trusts.

Zena Jones
Patient, Carer and Public Involvement Manager, Stroke Research Network (SRN)

Zena Jones is the Stroke Research Network Patient, Carer and Public Involvement Manager, and is based at the SRN Coordinating Centre in Newcastle upon Tyne. The SRN, through a number of Research Networks as well as the Coordinating Centre, exists to provide support for clinical research in stroke, by developing a world-class health service infrastructure, facilitating the running of research studies and involving people who have had a stroke, their carers, and professionals in stroke research. Zena's role includes developing policies and procedures to support the involvement of people with experience of stroke within the Network. Although based in Newcastle upon Tyne Zena travels nationwide to support the eight stroke Research Networks based throughout England.

Zena has had a wide variety of relevant experiences. Professionally qualified as a nurse, Zena became a principal lecturer with the University of Plymouth based on the Cornwall Campus. A main part of her role there was leading curriculum development - part of that remit included the development of modules at Masters Level in Continuous Quality Improvement (CQI) - this put service users at the centre of that development. After her move to the North East which was a wonderful culture shock (!), she also became Vice Chairman of a Board of Trustees of a Carers charity on North Tyneside.

Martin Lodemore
Patient and Public Liaison Officer, Diabetes Research Network (DRN)

Martin Lodemore is the Patient and Public Liaison Officer for the Diabetes Research Network (DRN). The DRN is part of the UK Clinical Research Network and has been funded by the Department of Health to achieve benefits for people affected by diabetes through excellence in clinical research. Martin is in post to establish and support patient and public involvement across the DRN. He is working closely with organisations like Diabetes UK, INVOLVE and the National Diabetes Support Team to ensure that patient and public involvement is effective, and that a range of perspectives are fully integrated into the DRN’s activities.

Previously, Martin was an administrator in a diabetes and endocrine department, coordinating a series of academic research programmes at St Mary’s Hospital. He has also taught practical IT skills to those seeking career changes and has worked within the legal system at the Inns of Court in London.

Terry McGrath
Patient and Public Involvement Coordinator, Dementias and Neurodegenerative Diseases Research Network (DeNDRoN)

Terry McGrath is the Patient and Public Involvement Coordinator for the Dementias and Neurodegenerative Diseases Network Coordinating Centre. DeNDRoN is a part of the UK Clinical Research Network, aiming to bring benefits to people affected by Alzheimer's and other dementias, Parkinson’s, Huntington’s and motor neurone disease, and related diseases. Terry is aiming to ensure a patient and public perspective in all DeNDRoN research. Patients, relatives and carers and all members of the public who are affected by dementias and neurodegenerative diseases need a strong voice in research, and Terry sees promoting that voice, and collaborative approach, as powerful drivers for excellence in clinical research and for more relevant investment in research.

Terry's past experience of involving patients and the public in an NHS primary care trust ranged from in-depth interviews to learn from individual patient’s experiences of health service to large formal consultations. He believed that public involvement should capture a wide variety of viewpoints, including people who tend to find it difficult to be involved. Following a psychology degree, his early employment included providing advice and one-to-one counselling in an HIV and sexual health centre. Terry says that one of his most interesting jobs was as a guide in a Hindu Temple in the Midlands; he believes that that role engendered a philosophical attitude to the challenges of life, which he still tries to maintain.

Geraldine Mason
Mental Health Research Network (MHRN) / Families/Friends and Carers Together in Research Coordinator

Marianne Miles
Patient and Public Involvement Lead, UK Clinical Research Network (UKCRN)

Marianne Miles is the Patient and Public Involvement Lead for the UK Clinical Research Network (UKCRN). UKCRN is a key part of the UK Clinical Research Collaboration and is in place to support clinical research leading to improved patient care and allowing people across the country access to the best treatment. Marianne is in post to establish and support processes that will ensure patient and public involvement (PPI) across clinical research activities, working alongside researchers and doctors, with the ultimate aim to encourage research which directly benefits, and reflects the needs and views, of patients and the public. In her role, as well as joining up with the UKCRC and its PPI plans, Marianne works closely with INVOLVE and other organisations for whom active and effective PPI in research is a priority.

Prior to this Marianne spent four years as Research Manager at The Multiple Sclerosis Society, where she managed the Society’s research programme, and supported the active involvement of people affected by MS in a range of research programme activities. She was also responsible for ensuring the production and dissemination of research information for people affected by MS in an accessible and appropriate format. Before moving to the charity sector, Marianne obtained her PhD in medical research, focusing on the development of a support system (a ‘bioartifical liver’) to support people with liver failure, in two London Hospitals.

Jenny Preston
Consumer Liaison Officer, Medicines for Children Research Network (MCRN)

Jenny Preston is the Consumer Liaison Officer for the Medicines for Children Research Network (MCRN). MCRN has been established to improve the capacity and coordination of clinical paediatric research across the UK. Jenny is in post to ensure that children and young people, parents, carers and organisations that represent children’s and young people’s interests are involved across all clinical research activities, with the ultimate aim to encourage research which directly benefits, and reflects the needs and views, of children and young people and members of the public. Jenny works closely with UKCRN, National Children’s Bureau (NCB) and other organisations for whom active and effective consumer involvement in research is a priority.

Prior to this Jenny spent two years as a project manager encouraging lone parents back into employment and training. She also has several years experience of working in the field of mental health, engaging with hard to reach members of the public effected by mental illnesses.

Roger Steel
Patient and Public Involvement Manager, UK Clinical Research Network (UKCRN)

Roger spent over seven years as Development Officer for INVOLVE, before joining the UKCRN in May 2008. There he was part of a team developing and promoting the patient and public involvement in research agenda across health and social care. Roger edited, authored and co-authored a number of INVOLVE publications. Prior to this he had a number of roles in the voluntary sector, including Community Development, Advocacy, Mental Health Services, and with Children and Families as an independent Family Group Conference Coordinator.


 

Roger Wilson
Associate Director for Patient and Public Involvement, UK Clinical Research Network (UKCRN)

Roger Wilson is the UKCRN Associate Director for Patient and Public Involvement. He also works on the patient related strands of UKCRC’s work programme. He has been involved as a patient representative in cancer for nearly five years, working nationally since mid-2002 with the NCRI and NCRN. His cancer is a rare one and he was treated on a clinical trial, so he has a particular interest in rare diseases and first hand experience of the value of research in helping to benefit patients. In July 2004 he was appointed Chair of the NCRI Consumer Liaison Group, the collective body of patient/carer representatives in cancer research. In this role he works with the funders (NCRI) as well as with the Networks (NCRN and its equivalents in the devolved administrations). He bring his first hand experience of working as a patient/consumer representative at all levels to the UKCRN Patient Involvement programme, as well as supporting Marianne Miles, the UKCRN PPI Lead, and Philippa Yeeles (UKCRC’s PPI Lead).

In a prior existence Roger worked as a journalist and TV producer first with the BBC then in independent production. During the late 1980s he became involved with the (then new) cable TV technology and through that worked across Europe as writer, conference chair, and strategic consultant in the emerging competitive telecommunications industry. He still writes – a newsletter and patient information about sarcoma – in his role as the founder of support charity Sarcoma UK.