The eyeforpharma Patient-Led Clinical Trials conference in London on 8th and 9th May 2017 emphasized that building trust between patients and pharma organizations is the first step towards truly patient-led clinical trials.
The term ‘patient-centricity’ is a real industry buzzword. This is unsurprising considering the pharma industry is now in a patient-driven health economy. With the era of personalized medicines and a technological age where rapid advancement in mobile technologies, patients are now empowered to access information about their condition and connect with other patients globally. This also means that patients can openly air concerns or dissatisfaction via online communities and forums if they feel their voices are not being heard.
For an industry that is typically slow to adopt change (think paper to electronic data capture), the pace at which pharma companies are building patient engagement into their core practices is rapid. In the last 2 years, we have seen progression from pharma companies talking about the idea of becoming more patient-centric to seeing dedicated patient engagement teams presenting initiatives that have worked well for their organizations.
A key part of this has been the building of trust between pharma and patients, as well as overcoming existing perceptions on both sides. The perceptions of pharma that were discussed included barriers to talking directly to patients and understanding what is appropriate and possible within the constraints of the heavily regulated clinical trial environment. Patient perceptions that need to be addressed include a mistrust of clinical research, a suspicion of pharma, and the difficulty in finding out about suitable trials in the first place.
Topics over the two-day event included best practices for bringing patients into the protocol design process and real-life examples of how companies such as Janssen, UCB, GSK, and Grünenthal are sharing information and working to engage patients at every stage of the their clinical trials. There was also a large focus on how technology solutions can be harnessed to support patient engagement initiatives.
One thing everyone agreed on is that in order to have a full discussion on barriers to adoption, colleagues from legal and regulatory sides need to participate with clear and practical input. There is no shortage of ideas being put forward by pharma and patients, but we need to balance these ideas with the real-world legal and regulatory requirements to create new models of working and achieve long-term success. It’s exciting to be part of this movement and I’m looking forward to reviewing progress and hearing fresh perspectives at next year’s event!