An OVID Health article by Jen Mannion
I recently had the opportunity to speak with two of the key figures at King’s College London’s Centre for Pharmaceutical Medicine Research, Dr Liz Clark and Professor Graham McClelland. Patient engagement forms one of the Centre’s central three research themes and is integrated throughout its teaching.
At a crucial time for the UK pharmaceutical industry, we discussed the role of patient and public involvement in medicines’ innovation and access.
Ultimately, Liz & Graham’s counsel was that patient engagement shouldn’t be viewed as a tick box exercise, but rather the insights that patients offer should be seen as invaluable to medicines development and lifecycle. Without the input of patients, resources may be poured into treatments that don’t align with actual needs, or which are impractical to use.
The Rise of Patient Engagement: A Historical and Digital Shift
Momentum in patient engagement has been building for decades. It began during the 1980s, when HIV activists championed the importance of patient and public involvement, building a community that had the power to make changes in HIV care, public opinion and policy, such as the American group ACT UP who pushed for faster approval of HIV treatments. Today, the internet and social media help to amplify voices, enabling communities to share lived experiences, raise awareness, and improve accessibility to non-biased and accurate health information.
Current Challenges and the Elusive “Toolkit Mountain”
Liz highlighted the current issue of the “toolkit mountain”. As pharma, not for profit researchers and other stakeholders realise the importance and value of patient engagement, there is now an abundance of best practice guidelines, but navigating these can be bewildering. While well-intentioned, this can lead to overwhelm for those seeking guidance best suited to their context. Tools & guidance developed in collaboration with patients by non-competitive coalitions such as Patient Focused Medicines Development (PFMD) and industry bodies such as EFPIA have started to pave the way for greater consistency in approach. Without such collaboration, efforts are often duplicated, and the potential for unified progress is lost.
Interestingly, both Liz & Graham expressed caution about mandating patient engagement in regulatory submissions. They argued that it could become a box-ticking exercise, leading to tokenistic involvement rather than meaningful collaboration, ultimately, reminding us that authentic patient engagement is the gold standard.
What Does Good Look Like?
According to Clark and McClelland, effective patient engagement hinges on three key principles:
- Authentic Intent: Engagement must be purposeful. Are patients being involved to meet a requirement, or to genuinely collaborate?
- Early Engagement: Ideally, patients should be involved throughout the lifecycle of drug development from bench to bedside and beyond. Whilst engagement early in product development is ideal, companies must be aware of the risk of creating false hope. Many pipeline products will not be successful, and patient collaborators need to be aware that even the ones which are eventually licensed and funded are unlikely to be available for some years into the future.
- Long-term engagement: The commitment of patient contributors deserves better than transactional engagement. If and when research programmes and projects conclude, the collaboration should be concluded proactively and with respect for those who have contributed.
The Future of Patient Advocacy
One of the most interesting takeaways from our conversation was the importance of gaining insight into patients’ experience from their first symptoms onwards and recognising the diversity of patient perspectives. Through timely engagement and gathering information on patient experience, pharma companies have the opportunity to utilise patient engagement in an authentic and useful way.
Whilst progress is being made within the patient engagement field, further progress is contingent upon all stakeholders in this space integrating the patient voice in their work and making such collaboration the norm for the next generation of professionals in pharma and related roles.
As academic centres like Kings College continue to lead the way in research and education, the hope is that all stakeholders, both commercial and not-for profit, will maintain the momentum, embracing patient engagement not as a mandate, but as a meaningful and ongoing partnership.
Article originally published on LinkedIn on 29th September
