Our Key Takeaways from the Patient Centricity and Engagement Conference 2024

Last month, my colleague, Laura Mawdsley, a Senior Medical Writer in our Patient Engagement team, and I attended the Patient Centricity and Engagement Conference. The conference discussed patient centricity in healthcare and pharmaceutical practices throughout drug development, approval and beyond, and showcased a variety of perspectives from industry experts, patient advocacy groups (PAGs), and healthcare professionals (HCPs). 

Here are our key takeaways:

Patient-Centric Decision Making:

Shannon Altimari from GSK emphasized the necessity of centring patients in all decision-making processes. Panels and discussions underscored the continual need for organisational and structural changes to truly embed patient-centricity into all phases of healthcare delivery and development – we should be considering patients as key opinion leaders and consulting them in the same way as we consult clinicians. Angela Rylands PhD CPyschol from Kyowa Kirin emphasised that patient voices need to shape research, to make it relevant and reduce societal costs.

Engaging and Empowering Patients:

Speakers such as Anthony Whitington (Fixing Us), Sujan Sivasubramaniyam (CSL Behring) and Jefferson Courtney (Haemophilia Society) highlighted the importance of ethical and impactful collaborations between the industry and PAGs. Principles for effective collaboration include a two-way flow of information, transparent regulatory frameworks, and empowering self-advocacy among patients.

Storytelling and Behavioural Science:

Dr Sumira Riaz (CPsychol) and Alexandra Dubois from Open Health explained how storytelling can drive behaviour change by incorporating patient experiences into the narrative to increase impact. This can be further supported by visual language and semiotics to evolve patient and HCP representations, as explained by Matt Hunt from 11 London.

Quantitative and Qualitative Measures:

The importance of both qualitative and quantitative measures in assessing the impact of patient engagement was repeatedly mentioned. Companies like Roche and GSK are leading in this space by demonstrating how PE metrics can enhance clinical trials and overall business outcomes. The integration of patient perspectives into R&D, medical, and commercial workstreams can drive significant impact with multiple case studies showing how consulting patients can improve clinical trial retention, lead to more relevant outcome measures and support improved adherence.

Collaboration and Transparency:

A recurring theme throughout the conference was the need for sustained collaboration and transparency between pharma companies, PAGs, and patients. Trust-building through ongoing, non-transactional relationships was seen as crucial. Examples such as the XLH campaign from Kyowa Kirin and Novartis’s patient engagement frameworks were shared to illustrate successful collaborations. Discussions also emphasised that it is essential to ensure that patient insights gathered during early stages are respected and revisited throughout the product lifecycle.

Overall Our Three Key Conference Themes Are:

1. Patient-Centric Decision Making: The need to prioritise patients in all processes, from early-stage research to post-market monitoring. Establishing trust, transparency, and autonomy for patients were pivotal points.

2. Collaborative and Ethical Engagement: The necessity for ethical, transparent, and mutually beneficial collaborations between the pharmaceutical industry and PAGs was a significant focus. Empowering patients and creating long-term partnerships were highlighted as best practices.

3. Integrating Behavioural Science and Storytelling: Utilising storytelling to drive behavioural change and integrating patient narratives into decision-making processes. The practical application of behavioural science to better understand patient behaviours and improve clinical trial retention and outcomes was emphasised.

It was great to hear about so many successful cases of patient engagement throughout the conference and have so many passionate people in the same room. Laura and I both returned to the office tired but inspired to continue to maximise the impact we can have with our work across pharma, MedTech, charities and healthcare systems more broadly!