Lived Experience and Communities Panel in Utrecht 2025

Co-production with those who have lived experience is something that we prioritise heavily at the International Forum. Following the fantastic contribution of the lived experience and communities panel to the International Forum in Utrecht in May 2025, we have once again recruited a panel that is responsible for taking part in the programme design and delivery process to ensure that we represent patients, carers and their communities throughout the conference.

Here are some of the ways we co-produce at the International Forum with our lived experience and community partners:

– Members of the lived experience and community panel sit on our wider programme advisory panel

– Each conference stream is co-chaired by a member of the panel, alongside technical experts

– We recruit a number of lived experience representatives who review abstracts submitted to the conference

– Every successful abstract presenter is encouraged to bring along a lived experience co-presenter, and we waive the registration fee for that person to attend

– The lived experience and communities panel are responsible for designing and delivering a number of sessions and workshops across the agenda, as well as coordinating meet-ups and networking for all lived experience representatives attending the conference

Gabrielle Matthews

Gabrielle is a multi-award-winning children and young people’s health advocate. A long-term patient, she role models the inclusion of patients in strategic decision-making as a member of the NHS Assembly. She sits as an Oversight Board member to the Research and Economic Analysis for the Long term (REAL) centre at the Health Foundation and is a member of the General Advisory Council at the King’s Fund. Her advocacy work extends beyond healthcare; She is a board member of the #iwill movement and a trustee of UK Youth, an organisation that supports over 7000 youth organisations and collectively reaches 4.1 million young people. Gabrielle is an academic foundation doctor in North Central London with an interest in co-production and power in both research and policy development. Her current thinking is focused on individual and systems leadership and how we can equip and mobilise all health care professionals to lead with and for kindness.

Emma Doble

Emma Doble joined the BMJ in 2018 and is the patient and public strategy editor, leading on the patient and public partnership work across the BMJ. At the age of 4, Emma was diagnosed with type 1 diabetes which she struggled to manage growing up. She set up and developed a number of projects to initiate peer support for young people with type 1 to help others manage and cope with their condition. Her interest in patient partnership began when she began working with her local diabetes team to review, and redesign, the diabetes service whilst completing her MSc in Health Psychology. Emma has also worked with many other organisations on patient partnership including Cochrane UK, JDRF, Diabetes Scotland and the Scottish Government.

Anne-Miek Vroom

Anne-Miek Vroom is a medical sociologist and the founding director-CEO of IKONE, a non-profit foundation.

Living with the rare condition Osteogenesis Imperfecta, she brings personal experience to her work, guiding organizations—across healthcare, government, and collaborative partnerships—toward fostering equal relationships between individuals, professionals, and key stakeholders.

At IKONE, Anne-Miek leads efforts in three key areas: developing innovative methods for collaboration, facilitating their use, and conducting action research. These initiatives are always carried out in direct partnership with professionals, based on the belief that true transformation in healthcare and beyond can only happen when all perspectives are considered.

Inspired by Albert Camus’ words, “You cannot create experience, you must undergo it,” Anne-Miek ensures that lived experience is central to every initiative, promoting a more inclusive and collaborative approach to societal challenges.

As an international keynote speaker, she advocates for human-centered transformation at major conferences and events worldwide.

Karin Schoonenberg

I live in Utrecht, the Netherlands with my husband and 3 daughters. I have worked in the University Hospital of Utrecht for 24 years now first as a nurse and now as a project manager in care. Also, I’m a lived experiencer; I survived cancer in 2022-2023.

Désirée Hairwassers

My name is Désirée Hairwassers. I live in the Netherlands. Educated as a health scientist (in health promotion and mental health), I used to work for pharmaceutical companies.

In my family, we had to deal with several medical issues (daughter septic shock, father glioblastoma multiforme, sister breast cancer, husband rare interstitual lung disease). I myself was diagnosed with breast cancer at the age of 36. The tumour was missed on mammogram and echogram and I had a rather bad prognosis. My daughter was 2.5 at that time. I am pleased to say that I am now 17.5 years after diagnosis.

I became a patient advocate for breast cancer and hereditary breast and ovarian cancer just after my diagnosis. I used to be very active on these subjects on Twitter (@Caseofdees). I give courses to GPs on how to deal with medical mistakes. I was a member of the Dutch breast cancer guideline committee. I host several patient support groups. My goal is to empower patients and support real shared decision-making.

Birgit Hartoft

My name is Birgit Hartoft, I am a retired IT specialist who lives with my pets in a leafy surburb north of Copenhagen, Denmark.

I am a widow. My husband’s death in 2006 from kidney cancer became an unnecessarily horrific debacle of endless pain and anxiety because of an entirely preventable medication error which was made possible by a complete breakdown in communications between my husband, me and the hospital staff.

As a quality and process SME (subject matter expert) in my own field, I wanted to get to the bottom of how a comparatively simple, preventable mistake could result in my husband’s too early death, and I wanted to help prevent anything similar from happening to anyone else. So I became a WHO PFPS (Patients for Patient Safety) Champion under the auspices of the Danish Society for Patient Safety in 2007, a
year after my husband’s death.

Since then I’ve participated in Danish work groups on health care improvements for the Society, and for the Danish Health Authority, been keynote speaker at small conferences and work groups, participated in patient safety conferences at home and abroad, and I regularly guest lecture on a communications course for newly graduated doctors, where I tell my husband’s story and discuss the many relevant issues it throws up. For many of the junior doctors I’m the first person with negative lived experience that they have met and talked to.

Lately, I’ve begun to include my own experiences with health care, good and bad, in my work.

In 2023 I was part of the lived experience team for the BMJ International Forum in Copenhagen, where I also was speaker at a couple of sessions. In 2024 I participated in the Forum in London, and now I’m on the Lived Experience Panel for the 2025 BMJ International Forum in Utrecht.

Stella O’Brien

Stella works with digital technology and researches the implementation of knowledge-based systems.

She has extensive experience of health and social care systems through her personal experience and someone with caring responsibilities. She leverages these experiences as a volunteer for several charities and organisations in the arena of health and social care.She appraises research proposals for NIHR, CRUK, and other funders. She’s a co-applicant on proposals for the greater adoption of plain language in public-facing documents.

She contributes a patient and public perspective to the development of living guidelines for NICE, and is a member of a NICE technology appraisal committee.

Stella acts as a reviewer for several journals. She was the BMJ’s Patient Reviewer of 2022. She’s an active contributor to the Cochrane Collaboration including the citizen science platform, Cochrane Crowd.

Stella chairs The Healthcare Improvement Studies Institute (THIS Institute, Uni of Cambridge) Engagement and Advisory Committee.

Prachi Khanna

Prachi Khanna is a graduate student at the London School of Hygiene and Tropical Medicine where she is studying towards her Master of Science in epidemiology. Prachi Khanna brings a strong background and interest in health systems, healthcare decision-making and a patient-centred orientation. With curiosity and a strong desire to ask better questions about how things work, Prachi Khanna is committed to bridging gaps through cross functional collaboration.

Prachi Khanna serves on the Executive Sterring Committee for Critical Care BC health improvement network, the Heath Technology Expert Review Panel at Canada’s Drug Agency (CDA-AMC), and facilitates interprofessional health education at two faculties of medicine on pertinent topics.

Esther Greaney

Esther works for the NHS as a Lived Experience Peer Support Worker in an Outpatients Eating Disorders service. She has been in this role since 2023 and was previously a patient under the same team from 2013-2014. She was the first Peer Support worker in the team, so has worked on defining the role and embedding it into the service. She now also offers support and guidance to new Peer Support Workers who are joining the team. She has been an advocate for utilising lived experience long before she became a Peer Support Worker. A lot of her work involves co-production between service users and clinicians and this is something she is very passionate about. She was a member of the Lived Experience and Communities panel for the forum in London in 2024, and will be joining for a second time in 2025 as part of the panel and the Change stream.

Eman Shannan

Eman Shannan, breast cancer survivor and a long-serving cancer patient advocate on local, national and international levels, provides support to those living with cancer, raising public awareness and supporting women’s health rights. Founder and General Manager Aid and Hope Program for Cancer Patients Care (AHP) since 2009.

As a specialist in participatory development approaches and result-based management, my focus is on outcomes and impact. I have led large-scale development programmes in diverse thematic areas including female empowerment and gender issues, youth, health, education, and disability programmes. I have also carried out numerous civil society capacity assessments, assessment studies, high quality training, program and project evaluations.

Professional Memberships:

– Member, Gender in Humanitarian Action Working Group (GIHA) Steering Committee

– Member, The WHO Symposium on Meaningful Engagement Steering Committee

– Member, The Patient/Advocate Committee for The Lancet Commission on Women and Cancer

– Member, UICC’s Cancer Advocates Programme