Setting the scene
Patient engagement is nothing new.
For decades now, people living with health conditions have taken an increasingly active role in research, drug development, and healthcare, contributing valuable perspectives to inform research priorities, clinical trial design, service delivery, and more. This has resulted in a huge range of benefits for patients, such as greater relevance of research to real unmet needs, better consideration of personal treatment priorities (e.g., protecting quality of life), and liberation from unnecessarily burdensome or restrictive requirements for study participation.
As such, the ‘patient engagement professional’ has emerged as a crucial player in the intersection between industry and people living with health conditions. Presenting with a wide range of skills across science, advocacy, business, and emotional intelligence, these professionals – who may be based in biopharma, patient organizations, or a range of other settings – champion the needs and priorities of patients ‘from bench to bedside’ every day.
However, despite increasing recognition and commitment from regulators, pharmaceutical companies, academic institutions, and more, this crucial practice has been neglected by budget holders the world over. As such, patient engagement professionals have not been afforded the deserved opportunities to develop their own practices, connect with one another, and advance their field as, for example, those working with doctors – until now.
How ISPEP began: where, when, and why
In April 2024, a group of patient engagement professionals met at the Measuring Patient Engagement Summit in Boston, USA. During this one-of-a-kind event, a clear call to action was heard – that the time had come (and indeed, was long overdue) to standardise, measure, and share patient engagement practices.
The ‘professional society’ model was recognised as ideal for this purpose – an organisation dedicated to providing resources, facilitating community connections, and tackling the tough challenges holding back progress across the field. Despite such societies existing for various areas of specialism across the pharmaceutical industry (and healthcare more broadly), no such organisation has existed for those working with / advocating for the most important ‘stakeholders’ in all of health – the patients.
And so, the International Society for Patient Engagement Professionals (ISPEP) was born. This not-for-profit group, founded by patient engagement experts Emma Sutcliffe and Alexandra Charge, was formed to provide support on both micro and macro levels – in other words, not only assisting individuals with their professional development and day-to-day queries, but also working to ‘move the needle’ by taking on the tough challenges restricting current practice.
My mission, along with the other members of ISPEP, is to leave no stone unturned to engage and include patients every step of the way, from bench to bedside.
Because patients and their loved ones can’t wait, and by engaging them in every step of the process, truly making them ‘number one’, we can reach them faster and develop better solutions to improve their futures.
Jessica Klein, ISPEP Member, United States of America
Who has joined?
Now with over 700 founding members representing 93 biopharma / clinical research organisations, 70 patient organisations, and 95 ‘solution providers’, ISPEP has rapidly and powerfully developed into a motivated and mobilised community, with members giving their time freely and enthusiastically to exchange ideas, ask tough questions, and learn from one another on a daily basis. The momentum of new members signing up and contributing to group discussions has been truly remarkable.
Where are we now?
Following a kick-off meeting in August 2024, the inaugural face-to-face ISPEP Social took place in September, tagged onto the Pharmageddon conference. Several ISPEPpers spoke at / attended Pharmageddon, marking the first-ever event at which ISPEP was listed as an official organisation in attendance.
Since then, the ISPEP Founders and a committed team of volunteers have continued to work tirelessly behind the scenes to secure sponsorship for the exciting projects the Society will be delivering in the coming months. With numerous sponsors already on board, the ball is very much rolling here! In just a few short weeks, we have launched multiple series of resources – 'Voice to Value' case studies, expert residencies, the ‘PEP Talks’ podcast, community articles, and last but not least, ‘The ISPEP Insider’, a monthly, members-only newsletter consolidating important updates on the Society and wider world of patient engagement.
Although great strides have been taken towards patient-focused drug development by companies, groups and individuals, for me there has always been an element missing: a common mission where we all leave our various corporate hats at the door and work alongside each other purely for the benefit of patients and their families.
That’s why I’m proud to be a member of ISPEP. A society with one agenda – to combine the experience, energy and knowledge of the group to help each other embed patient engagement practices as a priority in the development of medicines. A rising tide to lift all boats.
I’m in.
Jon Hoggard, ISPEP Member, New Zealand
What's next? Why should I join?
Over the coming months, our community will keep growing and discussions will continue to thrive, moving from a now-(mostly-)retired WhatsApp group to our new online hub (where you’re reading this now!). On this hub, members’ expertise will be shared, explored, and harvested, through case studies, expert content, chat forums, and more. Whether you want to generally sharpen your skills or suddenly need ‘fast facts’ to support a project pitch, ISPEP is here for you.
You’ll find a warm welcome at ISPEP – we are actively committed to providing a non-competitive, non-hierarchical, and genuinely collaborative environment. Our community dedicates free time, freely, to elevate and enhance the work we all do – regardless of background, role, or organisation. We’re here because we care.
We’ve been inspired, we’ve mobilised, and now, we’ve officially launched. We certainly have a lot to celebrate, but as Frank Sinatra once sang… the best is yet to come.
This article was written by Olivia Kersey, ISPEP Managing Editor.
“This is such a phenomenal source of info/tips/facts etc. Thanks so much for taking such a task on – no-one can say it’s not needed.”
ISPEP member
“I’m excited to see the passion, collaboration and the vision of this society of like-minded people who will work together to make a difference for the patient and healthcare community. I’m excited to be part of this momentum and am inspired to do more where I can.”
ISPEP member
“Thank you for bringing us together! Thrilled to be in the presence of all of you to learn and share and grow.”
ISPEP member
“It is so great to finally have this community; it’s much needed!”