Meet the members of our new Community Committee

Alisha is a researcher at the University of Glasgow specialising in using genetic data to inform on drug effects, particularly for cardiometabolic and psychiatric conditions.

Her PhD training was at the University of Glasgow, performing data-driven in silico 'clinical trials' using omics data. Before that, she worked on clinical trials and human tissue research in the field of pharmacogenomics. She is also a member of a Research Ethics Committee, reviewing ethical considerations for projects involving the UK population, particularly their genetic data. She champions research communication, ethical use and storage of human genetic data, and increasing population diversity in healthcare research.

Andrew George is an immunologist who has spent much of his career working on finding ways to treat cancer and organ transplants better. He is a Non-Executive Director of the Health Research Authority, and was previously Chair for the National Research and Ethics Advisors' Panel (NREAP), for which he received an MBE in 2017.

He is also Co-Chair of the UK Committee on Research Integrity and on the Workforce, Training and Education Committee of NHS England. He is also Deputy Chair of an NHS mental health trust and has other roles in education and charities.

Anne-Laure Donskoy is a citizen researcher activist in medico-social sciences. Involved in the psychiatric survivors' movement since the early 1990s, she came to health and care research through her experience as a mental health patient, and now as an autistic woman. Her interests focus on ethics and research ethics, the psychological and political aspects of health and care research, the genuine and active involvement of people in this incredible endeavour, and on diversity and inclusion.

She has participated in research as a subject, as a collaborator, as a co-researcher and has coordinated a team of patient-researchers. She has been involved with various organisations, among which the National Institute for Health and Care Research (NIHR) Academy and regional Research and Design Services, as well as local universities and, of course, the HRA as a member of the HRA's Public Involvement Network.

She has published and co-published on patient and public involvement in research in English and in French. Today, she is also a part-time PhD student in gender and politics at the University of Bristol with a project based on her political experience of Brexit.

London east-end baby-boomer, Christine Vial, now living in Enfield, North London, is a teacher, writer, counsellor and life-long social activist. Living with chronic illness, and having been a carer first for her parents and now for her husband, over twenty years ago she was motivated to become active in patient engagement and she hasn’t stopped yet.

Neuro-diversity is one of her super-powers and diversity and inclusion, communication and creativity, and health and illness as holistic social and political paradigms are key areas of interest and expertise.

She’s been involved in many local and national organisations, most significantly as a long-term member of NIHR Involve. She’s been involved in the HRA’s work as a member of the HRA's Public Involvement Network and was a member of the previous Community Insight Group which has now evolved into the Community Committee. Christine is also a member of University College London’s Expert by Experience group, their advisory group, their education group and is a co-applicant on one research project and on the steering group for another.

Recently, she became a patient advocate for Behavioural and Social Science Teaching in Medicine (BeSST). Locally, she’s active in the North Central London Integrated Care System, Enfield’s Over 50 Forum’s health group and the Patient Participation Group at her surgery.

Eleni brings valuable experience in co-production and has been involved as a member of the public in research, service provision, education and commissioning . She is autistic, a permanent wheelchair user and has a variety of health conditions. She brings several perspectives as an activist, a researcher and a qualified social worker.

Since the 1980s, she has worked for disabled people's organisations as well as research funders and providers, including the NIHR and SCIE. You can also read about Eleni's other experience, including publications. Eleni is particularly keen on user led research and co-production, and has always been a member of smaller grass roots organisations.

Jan is from Bradford in West Yorkshire and has lived experience as a carer for parents with cancer and dementia. She has a medical condition, and a family member who has a different condition, so she's very aware of processes and services within the healthcare system.

Jan has worked in research administration on a national research study within a university setting. She has a background in project management, including education business management and school design.

Jan is part of Public Engagement in Data Research Initiative (PEDRI) working groups, developing best practice standards and resources, surveys and recommendations. She spoke at a recent PEDRI event to give Patient and Public Involvement and Engagement (PPIE) perspective on its work.

Jan has extensive and varied PPIE experience including:

• the National Institute for Health and Care Research (NIHR), working as a funding committee member and on the patient advisory board
• NHS England, working on the Medicines Optimisation Clinical Reference Group and Cancer Experience Survey Advisory Group
• Cancer Research UK, working on their PPIE data strategy
• Health Data Research UK, working as a member of its public advisory board, speaking at events and giving PPIE perspectives on initiatives
• DATAMIND, working as a member of the research advisory group leadership team
• MQ Mental Health, writing a blog on longitudinal datasets work, speaking at events and webinars, and interviewing candidates for research fellowships

Jan also works with PHD students at her local university, advising on PPIE aspects of their research. She is particularly interested in patient safety and medicines optimisation and data sharing to improve care and services and lives. She believes research is enhanced when good meaningful relationships are developed between researchers and those with lived experience and that training for PPIE contributors is an essential part of their involvement and engagement.

She is actively involved in developing public trust in data sharing, and is currently involved in projects looking at using technology to improve processes and services for patients.

After an early career in economics and finance, Louise moved into university teaching, then consultancy and management in the charity sector. She has been a successful fundraiser for a wide range of not-for-profits, including medical research charities Prostate Cancer UK, Ovarian Cancer Action and Spinal Research. Louise worked closely with research managers, clinicians and researchers to understand the science and communicate it clearly to donors and the public.

She was also a human rights campaigner and trainer at Amnesty International and a service manager at the RNIB. Both organisations gave her insights into equality and human rights. Louise later managed a European environmental project, with partners in eight countries. She speaks French and Mandarin.

Louise has been a public contributor in health research since 2011, working with several universities. She has been a lay member of a Steering Committee for a large national clinical trial, university management committee and interview panels for research awards, as well as a patient researcher. She is also a participant in current research studies.

Louise joined the HRA’s Public Involvement Network in 2021. She has contributed to the development of our 2022-25 strategy and the Shared Commitment to Public Involvement, which now brings together 17 major funders, regulators and research organisations. She feels strongly about strengthening public involvement in health and social care research and the role of research in achieving greater equality between different groups and health conditions.

Louise contributed evidence to the All Party Parliamentary Group (APPG) on Medical Research for their recent report, Health Disparities: Why Medical Research is a Crucial Tool for Change.

Margaret is a stroke survivor, living with non-apparent disability, and is passionate about the patient and public voice being heard and respected in all aspects of health and social care.

She has a market research background and most recently spent four years working as an Insight Specialist with the Stroke Association. Since then, she has worked on public participation projects with the National Institute for Health and Care Excellence (NICE), the NIHR, NHS England and the HRA.

She's looking forward to helping improve the effectiveness of community engagement and increasing patient and public involvement as part of the Community Committee.

Sandra trained and practised as a social worker but spent most of her career in research in health, education and social care. While caring for her mother who had Alzheimer’s disease, Sandra interacted with a wide range of health and social care professionals and also became involved as carer with the Alzheimer’s Society, joining the research network.

Following that, she took a post in public involvement at Teesside University building a substantial database of people with a wide range of experience of health and social care who were willing to take part in teaching, interviewing, assessment and course development.

As a public contributor, Sandra has been involved with National Institute for Health and Care Excellence (NICE), Care Quality Commission (CQC) as an Expert by Experience, Economic and Social Research Council (ESRC) and the National Institute for Health and Care Research (NIHR).

Sandra is currently a lay member of Age UK's Policy Sounding Board, a member of the NHS Sounding Board for Older People and continues with her work with the Alzheimer’s Society.

Sarah-Jayne is a Clinical Research Manager in Midwifery at Medway NHS Foundation Trust. She began her career as a midwife, working on the maternity wards then as a community midwife for five years. She started her career in research in 2015 when she became a research midwife.

In her current role she has a focus on embedding research into clinical care, harnessing all the benefits of research activity for service developers and is focussed on ensuring all pregnant people have access to research opportunities. She is also a Reproductive Health Research Champion for Kent, Surrey and Sussex and is a member of the central London Research Ethics Committee (REC).

Simon Kolstoe is a Reader in Bioethics at the University of Portsmouth where his work looks at the role of ethics committees and governance structures in promoting research integrity. He chairs ethics committees for the HRA, UK Health Security Agency and UK Ministry of Defence. He is a trustee of the UK Research Integrity Office (UKRIO), and was the UK adapting author of the popular Oxford University Press 'Research Integrity' online course.

Stephanie Ellis is currently Chair of the Cambridge Central and Coventry and Warwickshire Research Ethics Committees (RECs). She also helps the REC community by being involved in interviewing members, mentoring them, and running some training courses. She received a BEM for her work in 2016.

Her career was in the civil service and after some years working in IT, she moved to policy development specialising in anti-discrimination in employment legislation. Stephanie was also active in the voluntary sector helping a number of health related charities, before being asked to join a REC in 1989.

She is also a pianist and helps teach piano teachers. She is currently Chair of the Piano Teachers’ Course Trust. Her other interests include swimming and she has coached a number of swim clubs and triathlon teams.