Day Two Highlights: The Patient Engagement Solutions & Innovation World Congress

From enhancing patient recruitment to providing long-term career guidance for patient engagement professionals, Day Two of the PESI World Congress offered a wide range of insightful perspectives, closing with consideration of what the future of the field needs in order to meaningfully drive change amidst a challenging professional landscape.

Redesigning recruitment: Evinova’s case for patients as consumers

In the morning session, Lisa Kerr from Evinova set out her argument for why clinical trial recruitment is broken and what it would take to fix it.

Her starting point was a power structure. Currently, sponsors and regulators sit at the top: they drive design, set inclusion criteria, and define success. Patients sit at the bottom, finding out about trials through their doctors or by searching, and joining if they succeed in navigating the process. Her proposed inversion was a world in which patient demand drives access, HCPs act as enablers rather than gatekeepers, and sponsors modify designs in response. The consumer analogy she used – the ability to browse, compare, and choose – highlighted how far clinical trial access lags behind the experience design of every other ‘consumer-facing’ industry.

To explore what this would look like in practice, Evinova ran a workshop with ISPEP bringing together both industry and patient representatives and industry to map root causes and brainstorm solutions. The workshop outputs were distilled into a soon-to-be-published report co-authored by ISPEP, which relates the findings to Evinova's new E-A-C-H framework: Education and awareness, Accessibility, a Consumer-focused experience, and Healthcare collaboration.

Working through each stage of the 'clinical trial journey', Lisa described what genuinely useful design looks like: trial awareness content built with advocacy and industry working together; trial consideration materials that explain not just what happens in a trial but why each requirement exists; screening processes that explain what comes next for those who don’t qualify rather than simply returning a “no”; and visit design that offers choice between decentralised and site-based models rather than assuming one size fits all. The point about screening rejection was particularly sharp – as one workshop participant put it, being turned down at screening “is like a slap in the face.”

On AI specifically: Lisa’s argument was that it offers the first realistic opportunity to do patient engagement at scale. AI can model site selection based on where patients actually are, tailor content for different populations faster than humans can, and drive recruitment by keeping patients better educated and supported throughout their journey. The caveat she was clear about: AI is pattern recognition. It cannot replace the human understanding needed to know what a patient is actually thinking — and currently, the gap between AI pattern recognition and real human response remains significant. 

Framing willingness to participate in terms of cognitive load

The next presentation continued the conversation on barriers to trial participation. Dr Angelika Grechnaya, Psychological and Behavioural Science Lead at pRx Engage, made a case that the field tends to misdiagnose one of its core problems. When patients disengage from clinical trials – at any stage – it’s typically treated as a motivation issue or a trust issue. Her argument was that it’s primarily a cognitive design issue.

The evidence she cited was striking: a meta-analysis found that half of clinical trial participants do not understand key information in the consent form – including what a placebo is. That hasn’t changed in 30 years. The reason, she argued, is that trials are not designed to align with how human decision-making actually works. People disengage before they reach enrolment, quietly, because the information load exceeds cognitive capacity before they’ve had a chance to weigh the decision properly.

Her framework focused on three psychological needs that must be met for sustained engagement: autonomy (the decision feels like theirs), competence (they understand enough to make it), and relatedness (they don’t feel like a mere data point). None of these can be addressed through better marketing. They require structural redesign.

A practical suggestion from the floor: placing neutral, unbranded signs in clinics – simply asking whether patients would like to discuss clinical trials – could increase the number of clinician-patient conversations about trial participation. The mechanism is low-tech and the cost is negligible.

The case against “passionate”

The core argument of Emma Sutcliffe’s presentation on the professionalisation of patient engagement was clear: the problem with describing patient engagement professionals as “passionate” is not semantic. It’s that passion is categorised as a feeling – and feelings are not sufficient grounds for resourcing decisions, budget allocations, or organisational infrastructure. Professionalism, by contrast, implies evidence, accountability, and transferable skills. The framing matters because patient engagement budgets are among the first cut when organisations restructure, precisely because they’ve been positioned as values-led rather than value-generating.

Emma cited numerous facts and figures, including that 81% of FDA approvals in 2019 stated that patient experience data in the new drug application was relevant to the approval decision. The overall message: evidence points for the importance of patient engagement are not values arguments. They are regulatory and commercial ones. ISPEP’s ongoing work – including grant navigation support launched at the congress and a growing library of career-progression resources – is oriented around giving practitioners the tools to make exactly that case internally.

What a patient organisation can build in ten years — and how

Earlier in the conference, Hannah Humphrey had shared the challenges of “advocating from the kitchen table”. Fortunately, Lara Bloom, founder of The Ehlers-Danlos Society, was on hand to offer guidance for how such early advocacy efforts can ‘bloom’ into much bigger operations. The EDS Society’s achievements are striking: £48 million in research funding raised over six years, a global registry of 22,000 people, a biobank collecting plasma, blood, urine and skin samples globally, a team of 48. Like Hannah, her starting point was two people, part-time, from a kitchen table – but how did Bloom get the EDS Society to where they are now?

She first gave a concrete account of what it takes to build patient organisation infrastructure from scratch. Her operational insight was specific: early on, the society had tried to use externally managed registries. The data was lost when those providers closed. The solution was to build their own, supported by a board member with data expertise. The lesson wasn’t “don’t collaborate” – it was that infrastructure built on dependency doesn’t survive. If the asset matters, own it.

Her fundraising observation was equally specific. For years, the organisation asked for “money for research.” A shift to presenting a concrete research proposal – a specific study aiming to identify a biomarker for hypermobile EDS – raised $1 million in 24 hours. That amount was matched, then matched again. All of that funding came from parents. The difference between the first approach and the second was not effort. It was specificity.

MSD's informed consent video – and why it matters who’s doing the work

MSD’s presentation from Marie Pullen and Gillian Thwaites on an animated, reusable consent video was a classic example of patient-focused practice – but the most striking point was who had led the work. Pullen and Thwaites are based in a clinical operations function, not patient engagement. Their point was direct: patient-focused practice is not the exclusive domain of people with “patient” in their job titles. The video was built with patient input, designed to reduce cognitive burden around the PIS/ICF, and reusable across trial contexts. The message to the room was that professionals across industry functions can and should be executing this work – arguably, active consideration of patient needs should be everybody’s responsibility for ethical practice.

Closing panel

The last panel of the congress featured Emma Sutcliffe, Lara Bloom, and Lisa Kerr, who spoke on the current and future state of patient engagement. Early on, Lara stated,

“I think the term patient expert has allowed such growth, but also allowed for so much limitation, because now there is this expectation you have to be an expert, and all you have to do is be a person with lived experience to actually contribute. So people feel like they need to go and do Master’s degrees. They feel like they need to do EUPATI and become this patient expert, but you don't. What we're talking about is much more ground level, ground roots than that. It's just sharing your experience of living with what you live with… that's it.” 

Emma then spoke directly from the stage with Jon Hume from Cuttsy+Cuttsy in the audience, highlighting the necessary role of ‘vendors’ in providing generic (anonymised) case studies on what industry patient engagement projects cost, what the return was, and what the approval processes were, given that these details are highly unlikely to be available directly from pharma companies themselves.

The panel then discussed the complexities of conceptualising the future of patient engagement, with reasons for hope (like a digital ‘revolution’) and causes for concern (e.g., job cuts) both being raised. Looking to solutions, a contributor from the audience then suggested that incentives from regulators may be a necessary step to systematically embed more meaningful patient engagement. Indeed, current regulatory guidance does not seem to be sufficient in driving impactful engagement across the board, so there is a potential case for a shift akin to that of the Orphan Drug Act in order to truly move the needle. Let us know your thoughts in the comments – the conversation continues…