Lived Experience Panel

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 our previous International Forums in Utrecht and London, 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.

Lived experience means the personal knowledge, insight and understanding that come from directly experiencing health conditions, care services, or the challenges of supporting someone with them. It’s what people know because they have been there – as patients, carers, families, or members of communities affected by health and care decisions.

People with lived experience bring perspectives that professionals alone cannot provide. Their voices help reveal what really matters to patients, carers and families, what barriers exist in real life, and what truly makes care safe, respectful, and effective.

Recognising and valuing lived experience means working with people, not just for them. When lived experience shapes how services are designed, delivered, and improved, care becomes more compassionate, inclusive, and effective – leading to better outcomes for everyone.

Meet the Lived Experience team in Oslo, at their hub in the Community Zone. 

Chair of the Lived Experience and Communities Panel

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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.

 

Members of the Lived Experience and Communities Panel

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Gabrielle Mathews

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.

 

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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.

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Lucy Robin

Lucy May Robin is a neurodivergent community practitioner, diagnosed with ADHD and autism in adulthood. A mother of seven, including NICU graduates and children with additional needs, she draws on both lived and professional experience to improve child health and family support. Based in Enfield, Lucy leads ABC Parents’ volunteer programme, supporting parents to become peer educators in CPR, bleed control, and child safety. She works collaboratively with parents, families, clinicians, community leaders, and advocates to co-design practical, inclusive solutions that build trust and reduce health inequalities. With a background in early years and safeguarding, Lucy is committed to making systems more responsive by ensuring communities are meaningfully involved in shaping the services that affect them.

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Patricia Ripoll Ros

Patricia Ripoll is President of Fundación VISIBLE and an international advocate for patient experience and health innovation. With a career spanning healthcare, pharma, consumer health, and digital health, she specializes in integrating the patient voice into system transformation and co-creating solutions with real impact. She is founder of MamaTieneMigraña, an award-winning platform recognized by the Spanish Society of Neurology for health literacy, and co-founder of #COVIDWarriors. Patricia frequently serves as keynote speaker, panelist, and advisor in global forums, including BMJ’s International Patient Advisory Panel, and has been recognized with national and international awards for her work in empowering patients and driving purposeful innovation.

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Katrine Kirk

Katrine Kirk has been a patient safety champion in Denmark since the network was established in 2007. Her three year long struggle with aggressive lymphoma (a type of blood cancer) taught her how very important it is for patients to be active participants in their own care. Several times during her illness, Katrine was able to intervene before just before potentially very dangerous medication errors were about to occur. She has encountered quite a few other breaches to patient safety, which all took place in the context of a hospital inhabited by competent and empathetic doctors and nurses.

Katrine holds an M.Sc. in business administration and has trained in Lean management, and it was quickly clear to her that good people (including staff) were suffering from the effects of poorly designed or poorly implemented systems. She made a promise to herself that if she survived her lymphoma despite her dismal prognosis, she would find a way to help improve the health care system. Becoming a patient safety champion was an important step in that direction, and she has given at least 100 talks about her patient story. Katrine Kirk is also a partner of the healthcare management consulting company PAR3, which she started in 2010. PAR3 specializes in bringing patients’ and caregivers’ perspectives into innovation and improvement initiatives in the health care sector. In her capacity as a management consultant, Katrine assists hospitals and other providers in executing patient engagement strategies, planning change projects, facilitating workshops, giving inspirational talks, and teaching in the Master of Public Health program at Copenhagen Business School.

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Clare Snyman

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Eline Grelland Røkholt

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Tracey Herald