CLARION CALL – Thoughts from the CPO with conference season 2025 in full swing

ISPEP presents the V2V studies to a very engaged audience at PatientsAsPartners, US

Here, there and everywhere: challenge ISPEP

At the time of writing I'm sitting waiting for a train to return home from ACTS 2025, London; a few weeks ago I was at Patients As Partners US and at the end of the month I'll be heading to chair the Measuring Patient Engagement Summit in Boston.

The eagle-eyed amongst you may notice that I'm not at Reuters EU. I was scheduled to be there but I was invited to observe a Patient Summit comprising 33 different PAGs ... which literally made me say 'no thanks' to a conference that is predominantly about a pharma sales fest and go listen to patients instead. A no-brainer for me. And more on that later.

I've been attending medical conferences since the late 1990s; Patient Conferences since 2012. This year there's been a noticeable change in the atmosphere and creative buzz for the patient events. This has been a long time coming; it is definitely here to stay. In fact I found myself being interviewed earlier today (alongside ISPEP CEO, Alexandra Charge) where we were asked about the 'seniority of participants attending – we couldn't resist questioning the absence of patient groups at the event, however. Once upon a time we would have been excited to have a one Patient Expert invited – now we are cross if they are not present en-masse. Bravo to that.

Which leads me to my summary from these events.

You can't beat a good post-it note with words of wisdom ...

Listen to learn mode

It is quite difficult to write a summary when you're not there in a reporting capacity but in a presenting or chairing capacity. In my case, I'm always in 'listen to learn' mode. Hence I decided to leave the reporting to the many brilliant writers in attendance who have already documented their thoughts on LinkedIn Instead, I simply took note of the key comments that I heard during presentations and interaction with the audience as contemplation points for fellow ISPEPers.

In no particular order; here are the stand out comments from Patients As Partners US:

• ”Advocacy is above product – you collaborate with and contribute to product development” Jayne Gershrowitz, Amicus Therapeutics

  
  

• “If you could’ve told me I’d have the chance to know him” Justin Hopkin, Parent

  
  

• “Bring a friend to a clinical trial” Sharon Rivera-Sanchez, Patient Advocate

  
  

• “There is no wrong answer when it comes to patient engagement – just start” Catherine Ames, Patient Advocate

  
  

• “They knew my name; that costs no money” Jon Nelson, Patient Advocate

  
  

• “We don’t want to talk to doctors to solve patients’ problems’ Ify Osunkwo, Novo Nordisk

  
  

• “I had to go from being invisible to being invincible” Patrick Gee, Patient Advocate

  
  

• “Patient centricity is operational and cultural; ‘should we' creates a molecule, 'could we' creates a medicine” Antony Yanni, Astellas

  
  

• “We implanted into feasibility so patient centricity is in our SOPs” Justin Bulk, Alexion

  
  

• “Case studies build a swell of belief so ROI is obvious” Angela Bilkhu, Roche

  
  

• “What everyone has when they join a clinical trial is uncertainty but also hope” Melinda Rothkas, Pfizer

Stand out themes included:

1. The professionalisation of relationships with PAGs moving ever closer to enduring partnership models

2. Continued call for sharing of case studies of good patient engagement practices

3. An implore for unity from Patient Engagement Leaders – whatever 'hat' you wear – we are ALL IN the game

4. Determination to keep delivering better collaborative projects that align patient experts with HCP expertise

5. Implementing patient centric practices in business asset-centric models including baking patient-enabling activities into company SOPs.

I always bring a bias to these events as my natural inclination is to listen out for presentations where organisational infrastructures are scaled-up and no longer siloed. So it was a personal thrill for me to see and hear this level of scale up from Pzifer, Roche, J&J, Lundbeck, Novo Nordisk and of course, Astellas. There is no doubt that these levels of end-to-end patient integration into PFDD are a due to a mix of individual leadership and sponsorship from ELTs.

Making the ROI question moot

ISPEP presents the V2V studies; next up presentation at the MPE Summit

Finally; it was a great pleasure to present the ISPEP V2V business case studies for the first time from sponsors ALIAD, Cuttsy & Cuttsy, Nexgen Healthcare and Zebricks. Next presentations will be at the MPE Summit and so ISPEP and ISPEPers are doing our bit to answer the ROI/ROE question on repeat – does patient engagement have a business value? Soon enough, that question will be moot because it will have been amply answered by us – the PEPs who continuously drive patients engagement practices beyond transactional in our organisations.

Onward