How connection can create impact in healthcare: Patient advocacy, at ESMO 2025 and beyond

At ESMO 2025 in Berlin, VML Health – a global network of health communications agencies that collaborate with patients, scientists, and creatives to improve lives – presented the inaugural Patient Advocacy Summit.

Insights were provided by bringing together patient advocacy leaders, clinicians, and industry partners, including: Dr Urška Košir, research manager at the Swedish Institute for Health Economics; Dr Thomas Hofmarcher of the Swedish Institute for Health Economics & co-lead for The Cancer Comparator Report in Europe; Dr Victoria Harmer, consultant breast nurse at Imperial College Healthcare NHS Trust; Sarah-Jane Barker, SVP global medical consulting at VML Health; Alexandra Lewis, director global medical consulting at VML Health.

The goal? To explore one, simple question: how can connection create impact?

In a landscape of complexity, connection unlocks

To find out more, pharmaphorum spoke with Nichole Davies, global chief strategy officer at VML Health, who chaired the Summit. She discussed in greater details how the key consensus that emerged was one of health literacy as a shared responsibility – by all stakeholders.

“For decades, we have been seeing the increasing fracturing of healthcare, in the sense that you have so many different stakeholders with different needs and motivations,” said Davies. “All the systems that we see in different markets around the world are increasingly getting fractured because treatments are becoming more complex, especially in areas like oncology and rare disease. So, in order for us to improve patient outcomes, which is obviously the key goal for all of those stakeholders, there is a need to really help patients connect more closely to their health, so that they can better advocate for themselves in in a world where advocacy is becoming harder and harder.”

The origins of patient advocacy are not new, but since beginnings rooted in the United States in the 1920s, where it was first recognised as a democratic human rights tool, the modern form of advocacy began a little later, still in the US and in Canada in 1966, during a cerebral palsy conference. And, as published in the American Journal of Law & Medicine, 50 years ago George J. Annas and Joseph Healey introduced the concept of a "patient rights advocate" in their seminal 1974 article published in the Vanderbilt Law Review. Indeed, the modern advocacy movement appeared in Britain in the 1970s and 1980s. In 1994, Advocacy – A Code of Practice was created, bringing together existing principles and guidelines for good practice.

“The connection between patients and their environments and the people that are there to support them through their journey, but also the connection between healthcare professionals and patients themselves, the relationships that they build and the way that they communicate together – these are all really important components of getting us to better patient outcomes,” explained Davies.

A world of difference, but united the same

Indeed, there are many patient advocacy groups in existence today, and they vary in size, in budget, and in the essential nature of the work that they do. Yet, fundamentally, the goal is the same: improved outcomes for patients.

“Everyone is working towards a similar goal and our belief is that, when you bring people together, you can be much more powerful in terms of the objectives that you're trying to achieve,” said Davies. “In terms of the shared learnings that you're trying to work through, there're so many different ways that these different groups can benefit from being brought together.”

“We have worked in patient engagement and advocacy with patient advocacy groups for decades at VML health: it's a very, very important part of what we do, not just from the point of view of aligning through philosophies and values, in terms of how we think about what's important, but also in terms of helping patient association groups better connect with patients, better serve the patients that they're working with,” Davies stated. “So, the intention behind the summit was to more formally bring together what is a set of quite disparate patient association practices in groups.”

“Ultimately, how we can improve the patient advocacy landscape out there was the big ambition,” Davies admitted. “And we were pleasantly surprised with the number of people who came [along]. Some of the issues that were surfaced by patient advocacy representatives in the room, including some patients, really helped us understand more about issues that perhaps we're not surfacing in the conversation today,” continued Davies. “One of the attendees of a pretty large US based patient association group in breast [cancer] is now forming an alliance with a smaller group because they met at the Summit.”

No one tongue, no one experience, but a shared cause

When it comes to health literacy – the ability of individuals to access, understand, and apply health information to make informed decisions about their health – empowerment is the aim. Yet, various challenges impede the development of adequate health literacy, particularly in marginalised and disadvantaged populations.

“Patients are navigating, in some instances and typically, very challenging diseases, very challenging lives […] and oftentimes we don't stop to think about language as a theme,” explained Davies. “We’ve got patients from all over the world living in all of these different countries globally and they're all trying to access the healthcare systems and perhaps English isn't always their first language. Health literacy is a huge topic we're very, very passionate about, but it's not necessarily easy to then even think about that from a second language point of view.”

“Then, add in disabilities – with perhaps speaking or understanding,” she continued. “As an example, breast screening is a really scary experience for the best of women. But throw a learning disability into the mix and you've got patients who are frightened of the machines, don't understand what the machines are here to do, and the whole experience becomes much, much harder for them.”

“There needs to be a support system that can navigate this journey with [the patient], help with language barriers, help with shared understanding,” said Davies. “One of the other, more alarming insights that came through from the discussion was the notion that when you are on medical boards and you are looking at the approval of medicines – there has to be a patient in the room for those discussions with the appropriate authorities and bodies, and that patient is supposed to represent that disease state and be able to talk to it, the need for therapeutics. Interestingly, in some markets – for example, there was somebody who was talking about Sweden – they have one patient advocate for all disease states. On those boards, they just use the same patient advocate for all of those reviews and that patient advocate is supposed to intimately understand all disease states and represent the patient voice, which is entirely impossible […] That's just entirely inappropriate.”

Ageing: A very real social determinant

Social determinants of health (SDOH) encompass a wide range of non-medical factors that influence health and well-being. These include socioeconomic status, education, neighbourhood and physical environment, employment, social support networks, and access to healthcare. Included within these demographical considerations is also ageing.

Advocacy plays a crucial role in supporting patients in the ageing population. Advocates ensure that patients' voices are heard and that their needs are met. They can assist with communication, representation in meetings, and filling out forms. Indeed, the NHS England Long Term Plan emphasises the importance of empowering patients to 'age well', including developing a practical model for frailty and improving care in older person's care. The UK is a member of the United Nations' 'Decade of Healthy Ageing (2021-2030)' initiative, aiming to improve the lives of older people and their communities.

“Community constructs have changed over time; there used to be much more of a strong community sense,” noted Davies. “That’s had a massive impact on ageing populations. There are a lot of families now that don't even live close to their ageing relatives. They live far away, they can't be there to support them in the ways that they need to be supported. [We’re also] seeing a lot of dismantling of social infrastructures and support services for elderly people. [But] the population numbers of elderly people are only going to continue increase; they're living with chronic disease and also acute disease as well. And […] it's very challenging for those community members to navigate their healthcare.”

Digitalisation as a connector

Of course, patients are increasingly using AI tools, such as large language models (LLMs), to manage their healthcare. They utilise AI for various tasks, including checking symptoms, researching conditions, and drafting questions for healthcare providers. This self-advocacy empowers patients to take an active role in their care, making them more informed and engaged.

“We had a lot of really rich discussion about AI and we heard from one of our academic speakers who has worked a lot in health literacy specifically about the role of AI,” recounted Davies. “[Through her] we learned that [surveyed] patients preferred engaging with AI, which was revealed to a room of HCPs – they were understandably quite surprised. [But] patients found AI to be more empathetic in terms of how they were spoken to, engaged with, and supported versus experiences with healthcare professionals.”

This is certainly telling of a health system well-known to be overburdened to the point of collapse: NHS burden and waiting times in England have been particularly significant, with the waiting list for planned hospital treatment rising to a record of 7.7 million in September 2023, but falling to around 7.4 million in August 2025. In short, healthcare practitioners (HCPs) are stretched – and stressed – to the limits.

“AI is going to probably play a really important role in helping improve health literacy with patients, in helping with shared decision making, which is fundamental to patient outcomes and taking the pressure off HCPs,” said Davies. “How patients are even assessing or having the ability to start assessing which treatments are right for them – they are turning to not just AI, but social platforms [as well] to help them make their decisions for themselves.”

There is a risk with this. LLMs are well known to be far from the point of presenting only perfectly unbiased material and misinformation is rife. Yet, improvements are steadily happening.

Building relationships; personalising advocacy

In the meantime, how can connection better create impact in healthcare? Well, VML Health is working with both patient association groups and pharmaceutical companies to bring them together to talk about the opportunities and challenges ahead in shaping the future of healthcare delivery through the lens of AI – the Summit was merely a catalyst for those intentions. And that in itself is a crucial starting point.

“Patient advocacy needs to be personalised, just as therapeutics are personalised,” Davies noted. “There is a similar need for us to think that way in how advocacy is delivered for different patient populations. To give you an example: there is a patient advocacy group around youth cancers […] There was a group in Brooklyn who used rap music to deliver the [health information] to the young people.”

“The vast majority of patient advocacy support is quite generic,” continued Davies. “It's, ‘Read a leaflet’, it's all very similar. How we look forward into the future, that's an area that I really want to get more closely into: how can we better personalise patient advocacy services so that those patients really feel this has been purposefully specifically designed with them and their needs in mind?”