I am a Professor of Medical Sociology in the School of Health and Human Sciences, University of Essex. My research is mainly about the  experiential perspectives of  chronic illness. This has made me aware of the importance of the patient voice and why it needs to be central to research.

I sit on the INVOLVE executive group as a representative of the NIHR Research Design Service (RDS). I am Director of the RDS for the East of England and the national  RDS lead for public involvement. The RDS provides advice and support to applied health and social care researchers developing funding proposals. We help  researchers engage with patients and members of the public to make sure that the research is relevant to and takes account of their needs.

I am one of the new Senior Public Involvement Managers for the National Institute for Health Research (NIHR) INVOLVE. Previously I was the Public involvement Programme Lead for NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC) East Midlands where I had a strategic role ensuring that the public involvement and stakeholder engagement was central to the CLAHRC, its projects and activities. I established and chaired the Patient and Public Partners’ Council and co-led the establishment of the East Midlands Centre for Black and Minority Ethnic Health to facilitate and support inclusive and diverse engagement providing a more ground up direction for the organisation. I have also been the regional Public Involvement Lead for the Research Design Service East Midlands.

Over the past six years I have worked with partners to develop and deliver numerous education and support packages for both members of the public and academic/clinical staff to facilitate more inclusive and substantial involvement. I also worked in the community sector in the precursor to Healthwatch, Local Involvement Networks (LINks) this coupled with my role in CLAHRC provides me with an inherent understanding of the health and social care services and issues facing individuals and communities. My neuroscience doctorate gives me the grounding and experience of research and strengthens my capacity in this role.

Email: paula.wray@nihr.ac.uk

I am a consultant, trainer, project and research manager who has worked in both university and practitioner settings. My expertise is in ensuring that research translates into policy and action.

I am passionate about public and patient involvement in health and social care research and practice. Most recently I have established the Centre for Public Engagement at Kingston University with the aim of developing a centre of expertise in patient and public involvement in research, education and service development and delivery. As well as undertaking research, teaching and training my role involved expanding the capacity of the faculty of Health, Social Care and Education to involve public and patients in the design and delivery of their education programmes and also their research. My commitment to public and patient involvement extends beyond research and I am Chair of my local Healthwatch.

I obtained a first degree in Public Administration and a PhD in Health Studies.

I have over a decade of experience working in health and social care research, including public and patient involvement, within a university setting, and over a decade’s experience of working in research and project management within public sector organisations, both in the UK and overseas, on ethics and corruption.

Email: gary.hickey@nihr.ac.uk

I am a Reader in Applied Health Policy Research at the University of the West of England, Bristol. I undertake research on partnership, participation and involvement in health, including involvement in research. I am also the Programme Leader for the Masters in Public Health.

I became interested in promoting involvement in health in the 1980s when I was a nurse but also discovered I had a long term condition that required frequent interactions as a patient. My experience was that in those days, health professionals generally did not welcome shared decision making. As I became involved in research, my commitment to involvement naturally led me to support involvement in research.

Zoë Gray was appointed as the Director of INVOLVE in 2016, after spending 8 years at the helm of a regional charity which worked with families and individuals to design services, improving the health, work and wellbeing of over 5000 people a year. Previously, Zoë led the strategic planning and funding of multi-million programmes of European Structural and Investment Funds (ESIF) across the South East region, having spent many years developing and delivering regeneration programmes and transnational partnerships for local authorities.

Zoë maintains a keen interest in community driven change, and the not for profit sector, and has held a number of Non Executive Director positions on charity, private sector and social enterprise boards. Latterly, she was a board member of the Enterprise M3 Local Economic partnership and the Chair of a regional European Structural Investment Funds (ESIF) Committee.

Since 2017, she has been a trustee of the Partnership Foundation Charity in South East Hampshire, where she has spearheaded successful community social innovation and homelessness work.

I am the Director of Business Support for the Health Research Authority with a lead responsibility for the HRA’s Public Involvement work in Health Research. My key responsibilities are to ensure that the HRA is able to play a significant role in promoting public involvement, both within the organisation itself and by influencing the key stakeholders it works with, for example researchers, sponsors and funders, to ensure that public involvement has an ever greater contribution to play in producing better health outcomes for the public. Prior to joining the NHS I had a background in local government where I took on a number of roles, managerial and operational, related to increasing community involvement in the development of public services with a particular focus on increasing the participation of young people in decisions that affected their lives. I very much welcome, and am grateful for, the opportunity to take on an observer role with INVOLVE and hope that I can contribute positively to its very important agenda.

I have recently retired as Director of STEPS, a charity for people with lower limb conditions which I co-founded 33 years ago. I became involved with research projects through STEPS when I was invited onto the steering committee of a Randomised Control Trial in the 1990s. Since then I have worked with parents, carers and young people in other quantitative and qualitative research projects, both as a member of focus groups and on steering committees. I believe that public accessibility and openness in the research process will help to make research more relevant and effective to the people that matter, patients and their families.

I was a member of INVOLVE for over eight years and I currently have a strategic role in promoting public involvement in research as a member of the Medicines for Children Research Network, the British Paediatric Surveillance Unit and the new birth cohort study, The Life Study.

I am a Reader in Health and Social Care Research at Sheffield Hallam University. My background is in health services research and my specific expertise is around psycho-oncology (specifically breast cancer) and palliative care research, patient satisfaction, patient and public involvement in health research. 

With colleagues at the University of Sheffield, I am developing  a nationally recognised model of involving cancer patients and carers in research which was the first of its kind within the UK (the North Trent Cancer Network Consumer research Panel) and which has subsequently been rolled out to other cancer networks across the country.

I was an executive member of INVOLVE until 2010 and since 2012 have become an associate member. Additionally, I am a member of the Research Design Service for Yorkshire and Humber PPI Forum which has helped to shape PPI policies and practice on PPI locally and regionally.

I became self-employed as a mental health user consultant in1992. I have used mental health services since 1978. At the beginning of the 1970s I gained an HND Business Studies and a Postgraduate Diploma in Advanced Marketing.

In 1997 I was appointed as a Mental Health Act Commissioner which in 2009 transferred to the Care Quality Commission. I work two days a month in this role. In 2000 I was appointed Honorary Fellow of Brunel University Centre for Citizen Participation. From 2002 until 2011 I was an INVOLVE Group member and a member of their Empowerment working group. I also work with the National Institute for Health Research (NIHR) as a peer reviewer and from 2008 to 2010 I was appointed as a member of the Health Technology Assessment (HTA) panel for psychological and community therapies.

From 2011 I have been a member of the Research for Patient Benefit West Midlands panel. I was chair of European Network of  (Ex)-Users and Survivors of Psychiatry (ENUSP) from 2004 to 2010.  I have a particular interest in conducting and participating in research and cross disability issues. I am a respected service user/survivor researcher.

I work for the University of Kent where I head up a research unit in primary and community care. I have a long standing interest in patient and public involvement sparked by my previous experience as a community nurse, and as someone living with a long term condition. My research interests are in patient experience and public involvement particularly in relationship to long term conditions. Amongst my current research projects I lead on a National Institute for Health Research funded project (RAPPORT) evaluating processes, impact and outcomes of patient and public involvement in health research.

I am a carer, my late mother suffered depression and paranoia and developed vascular dementia. Family I care for have autism and learning disabilities, stroke, heart conditions, head injury, graves’ disease and polymyalgia rheumatica, giving me a wide experience of health and social care.

I gained an MA in Medical Sociology in 2002. In 2004 I joined Patient and Public involvement in research (PPIRes), a volunteer panel of service users and carers in partnership with NHS Norfolk and the University of East Anglia. I was lay member of the Norfolk and Norwich University Hospital Research Governance committee for five years.

I sit on the University of East Anglia Faculty of Medicine and Heath sciences Ethics committee. I have commented on numerous study designs, have been involved in creating training for our volunteers, and have been on several management and steering groups. I worked for two years with a group called the Dialogue Trust in Norwich prison, a discussion group for prisoners, its aim to help re-integrate prisoners into society.