The importance of a patient-centric focus to improve the real-world use of medicine was extensively discussed during the 3rd Annual Patient Engagement and Experience Conference (16–17th May 2018, Amsterdam, Netherlands).

International stakeholders, including more than 65 healthcare professionals (HCPs), payers, regulators, patient advocates and patient organisations, took part in discussions on partnering with patients across the value chain.

Working together

Key factors influencing the optimal real-world use of medicines were highlighted by the meeting chair, Søren Skovlund (Aalborg University, Denmark). Strong leadership in both the public and the private healthcare sectors will be particularly important for building cross-sector collaborations that effectively target preconditions: patients cannot make informed decisions about medicines that they cannot access or cannot afford.

Silvia Bakkers (Janssen – J&J, Netherlands) emphasised that “big things can only be done together!” and that pharma companies and other stakeholders must work more closely together for effective value-based real-world evidence.

Robert Thomas (Cambridge University Hospitals, UK) flagged that a patient-centric approach leads to improved trial design and recruitment, to the improved distribution of results, and to the development of new care policies.

Alexandra Moutet (UCB, Belgium) highlighted how UCB is designing new trials directly with patients to identify unmet needs and to optimise the communication of results.

The patient perspective

Michaela Dinboek (Novartis, Switzerland) provided an overview of a recent revision to the Novartis Declaration of Commitment to Patients and Caregivers that was created with the involvement of all stakeholders.

Delegates discussed the design and implementation of sustainable patient support programmes and approaches for effective partnering with patients; stakeholders were urged to consider all aspects of patients’ lives when designing activities. Age group was specifically highlighted as an important consideration, as young people in particular have different lives and needs. The patient should always be the focus: the patient really is the expert!

Patient engagement activities

The second day of the conference brought plenty of food for thought about how patient engagement activities can be best implemented. Sarah Richards (NICE, UK) summarised how patients have influenced the work of NICE via patient experts, patient advisory groups and quality-of-life outcomes data.

Delegates had the opportunity to practice using a Patient Engagement Quality Criteria tool (Figure 1), described in detail by Dawn Richards (Canadian Arthritis Patient Alliance, Canada) and Søren Skovlund, that provides a practical framework and guidance for the planning and assessment of the quality of patient engagement activities. The tool covers seven key criteria, and delegates were immersed in roundtable discussions outlining the benefits and applications of each of these criteria.

Figure 1. The Seven Patient Engagement Quality Criteria

Stefan Florentinus (AbbVie, Netherlands) explored the challenges of patient engagement, including regulatory rules, transparency and perceived conflicts of interest. Case studies showed that many of these perceived barriers can be overcome with improved collaboration between stakeholders.

Overall, the conference highlighted the shared goals of all stakeholders: the need for transparency, open communication, clear guidance and improved collaboration for better patient support and engagement.

Due to the overwhelmingly positive feedback from conference attendees, the 4th annual meeting is already being planned!

By Søren Skovlund, Aalborg University, Denmark & Karen Robinson, Oxford PharmaGenesis, UK