Highlights from the Patient Empowerment World Congress 2025

For years now, patient engagement and patient centricity conferences have been established in the annual events calendar. For patient empowerment, however, this has not been the case – until now.

Hosted by Jocelyn Raguindin at Facilitate Live, the team behind the annual Patient Centricity and Collaboration World Congress, this new event marked a milestone for exploring the more granular nuances of patient involvement in research and care. 

Who was there?

Like other events hosted by Jocelyn and colleagues, there was a real mix of attendee backgrounds, covering industry, patient organisations, solution providers, and more. This was reflected in the diversity of presentations and also those in chairing or panel moderation roles. However, a key difference from prior events was the balance of attendees – this event certainly had greater weighting towards patient/PO attendance versus pharma. This is generally a hugely positive step, one that we should absolutely celebrate and recognise, but did lead to some consideration of how best to provide patient representation while ensuring enough of those other stakeholders who really need to hear patient voices are also in the room. In essence – at what point does a patient-oriented platform become an echo chamber, limited in its potential to drive change externally? Should these events be bigger to enable more people to attend, or would that dilute the impact and connection opportunities? We don’t yet have the answers, but it’s an interesting one to consider. Let us know your thoughts in the comments!

ISPEP representation was strong, with our CPO Emma Sutcliffe joining me for both days and attendance from a fantastic group of ISPEPers, including:

• Steve Clark, the Guest Expert for our first ISPEP Masterclass

• Monica Halsey, ISPEP Ambassador for North America

• Guests from our PEP Talks podcast, including:

  • Lara Bloom

  • Begonya Nafria Escalera

  • Victoria Harvey-Jones

• Long-standing member Sophie Wintrich and new joiner Kate Munro 

What was discussed?

Day One

ISPEPer Steve Clark from Strive for Five eloquently outlines the various dimensions of patient empowerment.

Day One was kicked off with a great dual presentation from Steve Clark and Carole Scrafton, exploring the true meaning of patient empowerment and inviting discussion of the relevant nuances. Steve also delivered an insightful session on healthcare professional–patient communication, bringing a vital focus on clinical settings that is especially relevant in the context of patient empowerment. Taking examples from bowel cancer care, this session strongly exemplified the urgent need to simplify and humanise the communication of medical information, especially given the complexity added by the recent integration of biomarker technology into cancer diagnosis and treatment.

A particularly powerful presentation came from Emily Reuben OBE, CEO and Co-Founder of Duchenne UK, who shared the incredible achievements of this organisation in creating a data platform (launching in 2026) to address the current lack of robust, complete, high-quality, longitudinal patient-reported data in Duchenne Muscular Dystrophy. This platform will be used to “support research and development and market access of new treatments, and ongoing evaluation and improvement of clinical care”. Linking clinical trial recruitment with educational modules and acceleration of treatment access, the platform is a gold-standard example of the power of patient organisations and also provides fantastic longevity to the outputs of the award-winning HERCULES project led by Duchenne UK to build a shared evidence framework. 

On another scientific note, Day One also featured a presentation from the Cystic Fibrosis Trust on their involvement in target product profile development, again exemplifying the strength of patient organisations in shaping scientific discovery and development. 

Monica Halsey, ISPEP Ambassador for North America, outlines the varied roles of Family Leaders at Holland Bloorview Kids Rehabilitation Hospital in Canada.

The same afternoon, we were delighted to see our North America Ambassador, Monica Halsey, share a great presentation on ‘educating and sustaining lived experience leaders’. Monica comes from a network of Family Leaders providing peer connections and advisory input through formal integration into the services of Holland Bloorview Kids Rehabilitation Hospital in Canada. The roles served by these family leaders include clinician education, research process consultation, study partnership, resource navigation, peer support, and more.

Day Two

Emma Sutcliffe, ISPEP Founder and Chief Patient Officer, bringing fantastic energy to an early start on Day Two.

The panel for diversity, equity, and inclusion practices for individualised care: Lara Bloom, Sarah Cross, Helen Bennis, and Olivia Kersey.

The morning of Day Two was chaired by our very own Emma Sutcliffe, who opened the day with a thought-provoking perspective on the application of psychotherapeutic models to the context of patient empowerment. I then had the pleasure of hosting the Day Two keynote panel, also featuring ISPEPer Lara Bloom, launching the day with discussions on how DEI practices can help ensure all patients receive high-quality, personalised care. Through this lens, we covered the impact of biases and assumptions on care delivery, the importance of representative trial populations, and how clinicians can build trust with patients from marginalised populations through empathetic, transparent, and validating communication. We also discussed responsible use of AI (that has been trained on suitably diverse datasets) – for example, to overcome any human biases that may compromise equitable differential diagnosis – and pondered the pros and cons of leaning into health influencer trends to build trust with underserved communities.

Following our keynote panel, Lara delivered her own presentation (which nicely complemented Steve’s from Day One), providing succinct and impactful guidance on the how and why of humanising clinical conversations. A particularly interesting point made was how human-centred care requires finding a middle ground between protecting patient privacy and preserving empathy. For example, while protecting privacy is essential, reducing people down to “Male patient, 60 years of age, presenting with abdominal obstruction” (specific example not from presentation) can be a damaging approach. Rather, it is best to remember the (often frightened/vulnerable) person at the core of the clinical ‘case’ – and communicate with them accordingly.

Claire O’Shea was diagnosed with an aggressive gynaecological cancer almost two years after first raising symptoms with her GP.  

We were then privileged to hear a particularly powerful account of fierce patient empowerment from Lowri Griffiths of Tenovus Cancer Care. Lowri shared deeply moving stories from two women in Wales – Claire O’Shea and Judith Rowlands – who had their gynaecological cancer symptoms dismissed and consequently experienced devastating, avoidable delays in diagnosis and treatment. These horrific stories were not anomalies; in fact, they represented what was identified as a systemic issue within the Welsh healthcare system. Before Claire’s untimely death earlier this year, she advocated tirelessly through Claire’s Campaign to “ensure policy change through people’s voices and stories and campaigning to change the culture of dismissing women’s voices in healthcare settings”. Along with Claire and several other women, Judith shared her harrowing story as part of the Senedd Health and Social Care Committee inquiry into gynaecological cancer care in Wales, passing away shortly after her video was shown to the Committee. The tenacity of these women is hugely admirable, but as I’m sure we can all agree, absolutely should not have been necessary (to say the very least!). We are grateful to Lowri for bringing our attention to this essential work – and, quite frankly, extremely angry that it was ever needed.

The amazing Lindsay Randall – Founder, CEO, Mother, paediatric nurse, and ISPEPer!

After decompressing over lunch, we returned to the topic of research via Lindsay Randall of Arthur's Quest / SLC6A1 Connect UK. Similarly to the impressive examples from Duchenne UK on Day One, Lindsay delivered a fantastic presentation of advocate-driven science, showcasing a portfolio covering genetic research, precision therapies, drug repurposing, and biomarker discovery – all exciting examples of the power of rare disease organisations to shape the future of care. We were excited to offer an extension of our patient organisation bursaries to Lindsay and team through our existing relationship with the International Bureau for Epilepsy, and can't wait to hear more from this amazing group.

To close the day, Emma hosted a panel on adopting multidisciplinary approaches to address patient needs beyond the medical. Through taking part in this panel, I was appreciative of the opportunity to highlight the damaging disconnect between health and social care (and additional services such as occupational therapy), calling for a better integration of medical, social, psychological, and complementary care in order to better support patients and relieve family carers of the huge burden of care coordination and knock-on effects on mental health, ability to work, and more. My fellow panellists raised additional important issues, such as the challenges of funding and healthcare resource allocation in underserved areas, and the importance of early, molecular testing-driven diagnosis for rare diseases to improve access to care.

How could the event evolve?

While the congress was a great success, it was noticeable that some presenters were focused more on general patient engagement/centricity than patient empowerment in particular. This was likely at least in part due to this being the ‘debut’ event, so it would be good for this to be addressed for future iterations – for example, by leveraging the content and output of the session hosted by Steve and Carole on the meaning of patient empowerment.

Closing thoughts

Olivia Kersey, ISPEP Operations and Engagement Director.

The inaugural Patient Empowerment World Congress was a joy to attend – but, quite rightly, also evoked more difficult emotions at times. With such genuinely inspirational champions for patients in the room, it was an event that I (and I’m sure many others) left with, simply put, a buzzing brain and a full heart – plus a fervent determination to do more to help alleviate the unacceptable situations faced by countless patients and carers worldwide.

Thank you to Jocelyn and team for having us and putting on such a thought-provoking event. We’re already excited for the next one!