Percipient perspectives from a patient advocate on International Patient Engagement Day

Trishna Bharadia is a multi-award winning patient engagement professional living with multiple sclerosis who has worked with over 100 organisations covering academia, industry (pharma, CROs, health tech and others), patient groups and charities, industry associations and clinicians.

Where it all began

When I started out in the patient engagement space over 15 years ago, as an advocate who didn’t know she was an advocate yet, patient centricity wasn’t even a buzzword. Whether it was industry or academia, it definitely wasn’t the norm to see “patients” (and by that I mean all types of patients, patient group representatives and caregivers!) being involved in any aspect of medicines or device development, or health research and service design.

Back then patients were having to prove their “worth” to get involved, were often working within sub-optimal conditions given their illnesses, and there was a definite lack of consideration given to patient involvement in the good practice guidance and regulations governing the healthcare space. This is what prompted me to advocate for change and led me to becoming a patient engagement professional (a term that encompasses my advocacy 'hat' as well as consulting and more).

Where we are now

Fast forward to 2025 and yes, we’re still talking about what value patient involvement can bring, but much less so as it becomes a more integral part of the healthcare ecosystem. This has come from willingness across stakeholders to “Carry the Change.” We’ve moved from “why?” to “how can we do it well?” Good practice guidance from professional bodies (e.g., ISMPP) and regulators (e.g., FDA, MHRA) are specifically calling out the need for patient involvement, and some are even involving patients in their development.

The work undertaken by multistakeholder organisations like Patient Focused Medicines Development (PFMD) and Transcelerate has driven a mindset shift and tangible change within the space, as well as setting an example as to what good multistakeholder collaborations can achieve, with their plethora of freely available tools, resources and guidance. And, the establishment of ISPEP as a global society that recognises patient engagement as a distinct profession has been a huge milestone.

We’re also seeing patient engagement happening at more points along the medicines development lifecycle, as early on as setting research priorities and developing target product and target value profiles, through to dissemination of results and authoring of publications. But generally it’s still being done in pockets rather than consistently from end-to-end, which is why we still need to strive for continued change to happen.

We must keep carrying the change

Patients are increasingly getting a seat at the table, although we still often have to ask for it. But we’re making inroads. We’ve moved from a passive, transactional model to a more active, collaborative, and data-informed approach. And as we have more influence in developing codes of practice and good practice guidelines (for example, I now sit on the Good Publication Practice steering committee and have also reviewed the upcoming update to Good Practice on Conference Abstracts and Presentations, the ABPI has a patient council, and EFPIA has its Patient Think Tank), we will continue to see fairer, more effective, more consistent and more embedded patient engagement in all aspects of health and care research. But we can’t stop there – there needs to be equity and diversity of patient voice present and there’s an increasing need to recognise and involve patient engagement professionals and independent patient advocates in these conversations, not just patient groups and the advocates who are affiliated to them.

Are patient engagement professionals still having to prove their worth? Sometimes, yes, and we need to get to a point where patient engagement isn’t “the first thing to go” when resources or budgets are tight. To achieve this, we need to continue to publish our work (not just in peer reviewed journals but in any way that will reach the intended audience – whether that’s white papers, magazine articles, podcasts….) and continue to share the impact and value of patient engagement beyond our own organisations and patient communities. Create case studies, share examples; the more the remaining sceptics can see that patient engagement is not an option but an imperative, the harder it will be to ignore. This is where ISPEP can play a pivotal role, for instance through sharing the Voice to Value case studies and continuing to create further platforms for best practice sharing.

I think we also have some way to go to ensure that everyone within this space that is talking the talk is also walking the walk. There’s so many “patient centricity” conferences or meeting sessions happening now, which yes, is a good thing for shared learnings, but often the organisers themselves aren’t following good patient engagement practice. All stakeholders involved in this space should be advocating for them do better, whether it’s a commercial event company, member-based professional/medical society or a non-profit that is organising the event. Ask the questions! At the very least, patient faculty should be reimbursed their expenses and remunerated for their time so that involvement is equitable and it’s not just patient advocates or patient organisations “who can afford it” that can accept invitations onto these platforms. That way we will truly achieve diversity of voice. There are ways to make this possible, including ring-fenced sponsorship deals. Industry sponsors of events are in a prime position to advocate for this. And even better would be to have patients involved in the event design/planning, abstract reviews and embedded throughout the programme, ISMPP (the International Society for Medical Publications Professionals) is a brilliant example of an organisation making this happen.

Save having formal mandates from the regulators and global adoption of guidance, it’s going to be down to us as individuals and organisations to “Carry the Change,” to ensure that patient engagement is embedded from end to end in medicines development and health research. Not just because it’s the right thing to do, but because it makes for good business sense and the best science.